Dis(sed) Abilities

Issue 64, Nov/December 2013

BROAD A Feminist & Social Justice Magazine

Table of Contents

Cover Art: J. Curtis Main

Dis(sed)Abilities

d a o r B ove L BROAD

Seeking art, articles, poetry, and media on love, relationships, conflict, family, attraction, dating, children, parenting, abuse, breaking up, romance, and more relating to social justice, feminism, and oppression.

Email BROAD.luc@gmail.com by 12/27!

December

BROAD Love January

Sex Positivity February

Living in Color: Race, Color, & Ethnicity March pt 1

Feminism: Then & Now March pt 2

Activism, Action, & Academia April

The Body Politic April

2014-15 BROAD Team Application & Interviews May

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The Issue of Men

A feminist is a person who answers “yes” to the question, “Are women human?” Feminism is not about whether women are better than, worse than or identical with men. And it’s certainly not about trading personal liberty--abortion, divorce, sexual self-expression-for social protection as wives and mothers, as pro-life feminists propose. It’s about justice, fairness, and access to the

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range of human experience. It’s about women consulting their own well-being and being judged as individuals rather than as members of a class with one personality, one social function, one road to happiness. It’s about women having intrinsic value as persons rather than contingent value as a means to an end for others: fetuses, children, the “family,” men. ~ Katha Pollitt

broad | brÔd |

adjective 1 having an ample distance from side to side; wide 2 covering a large number and wide scope of subjects or areas: a broad range of experience 3 having or incorporating a wide range of meanings 4 including or coming from many people of many kinds 5 general without detail 6 (of a regional accent) very noticeable and strong 7 full, complete, clear, bright; she was attacked in broad daylight noun (informal) a woman.

broad | brÔd |

slang a promiscuous woman

phrases broad in the beam: with wide hips or large buttocks in broad daylight: during the day, when it is light, and surprising for this reason have broad shoulders: ability to cope with unpleasant responsibilities or to accept criticism City of broad shoulders: Chicago synonyms see: wide, extensive, ample, vast, liberal, open, all-embracing antonyms see: narrow, constricted, limited, subtle, slight, closed see also broadside (n.) historical: a common form of printed material, especially for poetry

BROAD Mission: Broad’s mission is to connect the WSGS program with communities of students, faculty, and staff at Loyola and beyond, continuing and extending the program’s mission. We provide space and support for a variety of voices while bridging communities of scholars, artists, and activists. Our editorial mission is to provoke thought and debate in an open forum characterized by respect and civility.

WSGS Mission: Founded in 1979, Loyola’s Women’s Studies Program is the first women’s studies program at a Jesuit institution and has served as a model for women’s studies programs at other Jesuit and Catholic universities. Our mission is to introduce students to feminist scholarship across the disciplines and the professional schools; to provide innovative, challenging, and thoughtful approaches to learning; and to promote social justice.

Dis(sed)-Abilities This new issue of BROAD concerns the topics of disability and ability as they relate to physical, mental, and psychological aspects of our lives. You will find a range of expression, critique, and exploration regarding the challenges and benefits of different human capacities as they intersect with topics of liberation, social justice, and oppression.

BROAD Team

Diversity and Outreach Editor

Katie Klingel Editor in Chief

Emma Steiber

Contetnt and Section Editor

J. Curtis Main Advisor

Table of Contents

Table of Contents

Gaby Ortiz Flores

Cont bookmark here

Epilepsy- Yikes, Holly Main Perfect Work, Paralyzed Home, Peanut Teenage Hearing Loss, Sweetie

As we are now, May Sarton Is It You, Me, or Adult A.D.D.: Stopping the Roller Coaster When Someone You Love Has Attention Deficit Disorder, Gina Pera

tell-a-vision

Flirting (Push) Girl, Tiphany, Push Girls Disability Awareness, Électricité de France

Uncle Bubba’s Post, Bubba Weiler

Articles Believe in Yourself, Anonymous

Media /Art words are useless

Tweezers & Blood: Repeat, KBS

Forced Absence, J. Curtis Main

Are you prepared for Disability, Unemployment, and Supporting Yourself?, J. Chris Main

madads

Disability Exclusion

I, My Oppressor, Sharon Caldwell

AD(VANCE) [NEW!] Disability Inclusion

broadside

Disperfect, J. Curtis Main

FROM YOUR EDITOR J. Curtis Main BROAD Love Ad

BRO

tents Microaggresshuns

Oh Sh*T Now

They crippled, paralyzed, and disabled... me., Southern Belle & Jasmine Revolution

Mama Says...

career call

Note Taker Program Coordinator, Services for Students with Disabilities, Marie Monter

From Empathy to X-Men- Changing the Climate on Disability, Karla Estela Rivera

Message Me

How could society treat people with disabilities better?

middle eastern musings

Women Buried in Life: HELP ME! As I am sharing my story, with you., Abeer Allan

wla (re)animated

ALTSTYLE

feminist fires

Anna Stonum Papers

&

Ryan Murphy, Writer & Director

Sex and Dis(Ability), Katie Klingel

Columns Queer Thoughts

Destabling the Able-Bodied, Heterosexual Model of Society, Emma Steiber

Inside r out

They call me Helen Keller, J. Curtis Main

Over the Rainbow

ex bibliothecis

Libraries and the Disabled: Services & Spaces, Strengths & Weaknesses, Jane Currie

OAD

Constructing Normalcy, Lennard J. Davis Angela, Push Girls Auti, Push Girls When Black Women Start going on Prozac, Anna Mollow Toward a Feminist Theory of Disability, Susan Wendell A Mad Fight, Bradley Lewis Mia, Push Girls Beholding, Rosemarie Garland-Thomson Tiphany, Push Girls Disability Rights & Selective Abortion, Marsha Saxton Autism as Culture, Joseph N. Straus Why are so many Minority Students in Special Education?, Beth Harry & Janette Klingner

BROAD Schedule 2013-2014 CONTRIBUTOR GUIDELINES BROAD MISSION AND PEOPLE

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Manic Coping, Patrick Fina

quote corner

From Your Editor

Dear Readers, Two and a half years ago, the last issue of BROAD/ Digest that I led was “Future/Career.” The same week I graduated with my Masters degree in Women’s Studies and Gender Studies, we released the biggest issue of the magazine yet. Here I am, happy and exhausted trying to lead this new themed issue on dis(sed) abilities. This topic did not seem like it would happen just yet, but I am proud we pushed through.

I have experienced disability in my life as far back as I can remember. When I was little, my mother got sick. I do not remember a time when she was not sick in some way. Family members often tell me she was different; more vibrant and simply lighter on her feet before I was five years old. I very much

appreciate and look up to my mother for many of her abilities, so it is hard for me to imagine that she is or was “sick” or “disabled.” Indeed, I do not think of her as disabled, nor anyone, for that matter.

When we were trying to come up with a name for this theme, ideas were not coming easy. When I offered “Dis(sed) Abilities,” there was apprehension.

Yet the name is important. Why do we label some people and abilities as “not able?” Is life and action that clear cut? You either can or cannot? If the purpose of walking, for example, is to move your body from one place to another, then walking is but one method of moving your body. Thus, employing other ways of doing things offers gray in between dis and ability. Is anyone perfectly able? I suppose this

would mean they can do everything? Or is anyone perfectly disabled? I am not one to really speak to the politics of these terms, but I do know that, like many binary systems such as woman and man, black and white, rich and poor, disabled and able do a poor job of expressing our human ranges.

Beyond my mother, there are various dis(sed) abilities in my family and friends. Whether physical, mental, or psychological, so called impairments are common. We can think of psychological disorders, physical limitations and issues, and mental differences as falling in and out of the term “disabilities.”

When considering outreach for contributors, at first I was not sure who I could ask to speak to this topic.

Yet just moments into thinking of people in my life, I realized we are all touched in some way by different ways of thinking and doing. Thus, when you venture through this issue, you will find various concepts relating to disability.

For me, for over half my life, my left ear has had partial and distorted hearing on top of health issues. To the left is a picture of me under during one of many surgeries. I do not feel impaired, rather, I sense sound a bit differently than most. But for many people, hearing loss falls under disability.

Does depression disable a person? Can an abusive relationship be disabling? Can someone go back and forth between able and disabled depending on whether or not they are having a seizure? Does systemic oppression disable? These ideas and more are explored in this issue.

The question is not will you experience different abilities in your lifetime; we all will. Everyone has to learn how to move their bodies, for example. This

Every body is different. Two common threads through most of this issue are a call for understanding and respect plus a deemphasis on normal and abnormal.

Not until the last two centuries did statistics, bell curves, averages, norms, and the DSM arise to able and disable people. Below you will notice a bell curve. There is nothing inherently wrong with noting that people’s attributes might measure into bell curves. Issues and harm often arise, though, when people are normed using bell curves, especially when people and characteristics less common and toward extremes are branded as needing to be fixed, or are even used to put down others.

Beyond beauty in difference, humans are simply and realistically different from one another. Assigning various values to difference, where some are worthy and many are not, creates and enables stratifications, violence, inequities, and many other social ills.

We hope that as you read through the sections, columns, and contributions that you not only connect to other people’s experiences with dis(sed)ability, but that you also recognize the need to allow people to be the experts of their own selves. Ultimately, this topic may open discussion and connection.

Wait, I didn’t hear you...

Curtis

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Consider language. In our communication, we use words often that speak to ability and value: stupid, healthy, braindead, crazy, fit, abnormal, paralyzed, off, retarded, psycho, built, sick, strong, elderly, infantile, diseased, able, active, idiot, schizo, smart, bipolar, broken, special, syndrome, atypical, different, gifted, normal, eccentric, hysterical, odd, developed, brilliant, average, short, weak, talented, unable, athletic, work, weird, dumb, right, wrong, criminal, addict, broken, functioning, ill, coma, dependent, pregnant, abnormal, mutation, independent, obsessive, deficit, disorder, model, slow, perfect, ugly, funny, beautiful, common, rare, handicap, accessible, aid, disablity.

may include walking, crawling, blinking, and so on.

We are born with bodies and minds that require a lifetime of learning, exploration, and most importantly, understanding.

“W live world of Each of us e be normal o erately tries t state. We co the average p thinks, earn consume “The

“One of the tasks for developing consciousness of disability issues is the attempt, then, to reverse the hegemony of the normal and to institute alternative ways of thinking about the abnormal.”

concept of the norm, unlike that of the ideal, implies that the majority of the population must or should somehow be part of the norm.”

“As

“The loose association between what we would now call disability and criminal activity, mental incompetence, sexual license, and so on established a legacy that people with disabilities “Statistics is are still having trouble bound up with euliving down.”

“The problem for people with disabilities was that eugenicists tended to group together all allegedly ‘undesirable’ traits. So, for example, criminals, the poor, and people with disabilities might be mentioned in the same breath.”

genics because the central insight of statistics is the idea that a population can be normed.”

s abl way de p

sufficient research has shown, more often than not villains tend to be physically abnormal: scarred, deformed, or mutilated.”

- Construc

By Le

“As we will see, the social process of disabling arrived with industrialization and with the set of practices and discourses that are linked to late eighteenthand nineteenth-century notions of nationality, race, gender, criminality, sexual orientation, and so on.”

We in a f norms. endeavors to or else delibto avoid that onsider what person does, ns, or es.

“Darwin’s ideas serve to palce disled people along the yside as evolutionary efectives to be surpassed by natural selection.”

“In a culture with an ideal form of the body, all members of the population are below the ideal.”

cting Normalcy

ennard J. Davis

“It is instructive to think of the ways in which Freud is producing a eugenics of the mind--creating the concepts of normal sexuality, normal function, and then contrasting them with the perverse, abnormal, pathological, and even criminal.:

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“The word ‘normal’ as ‘constituting, conforming to, not deviating or different from, the common type or standard, regular, usual’ only enters the English language around 1840.”

“The ‘problem’ is not the person with disabilities; the problem is the way that normalcy is constructed to create the problem of the disabled person.”

Dis(sed)-Abilities

Epilepsy- Yikes

Holly Main

Flashback to me at five years old on the morning of Halloween. I still remember it like it was yesterday. I was dressed up as Pippy Longstocking sitting at our kitchen table eating breakfast with my brother, more excited than a kid on Christmas morning. My mom was in the kitchen making her annual chili discussing our evening route for trick or treating.

The more I tried to focus on what she was saying the harder it got. My mind was racing and my vision started to look like I was looking through one of those infrared cameras. The only words I could get out were “I feel weird.�

The next thing I knew I was laying on the kitchen floor in my moms arms as she was screaming at the poor 911 dispatcher to come help. I woke up so confused. What happened and how on earth did I get on the ground with my mom? Why was everyone in my family freaking out around me? And why on earth was I sweating bullets and tired?

I later learned that this occurrence was the first of many seizures that I would have in my childhood.

I never made it to school that day to show off my costume. It was the first of many school days I would miss due to this.

the lake without a life jacket or stay up later than I was supposed to even though the lack of sleep would bring on seizures. I was one of the lucky ones with epilepsy because I could usually tell when one was coming on to prepare those around me for it.

Seizures can make you very confused. One minute your awake and the next you are down on the ground feeling like you ran a marathon, absolutely exhausted and little mortified because you lost control of your bladder. Also known as you pee your pants. Not a good look if you are older than three and potty trained.

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I dreaded the first day of each school year because I knew the teacher would have to explain what to do if I had a seizure to the class.

After lots of tests they diagnosed me with epilepsy.

The doctors were always nice but it was scary at that age when you had to get a scan of your brain. Laying there still in the big white machine that looked more like a coffin to me. Being the youngest of five children was hard enough, but adding seizures to the mix really threw my life for a loop as well as my families.

My brothers were always looking out for me during these, catching me as I would fall so my head wouldn’t hit the ground and putting me on my side, making sure I didn’t swallow my tongue. I became a little rebellious the older I got because I did want to be able to be normal.

When my parents were not looking I would swim in

Around age 13 is when the seizures started to stop for me, something that doctors said might happen when I started to hit puberty. This was music to my ears because that would mean I could get my license at 16 like everyone else. Of course I had to wait on some board to give me permission to get it and had to wait an extra few months after my 16th birthday when they did, but I got it! One big step to being normal.

The next was proving to the doctors that I could drink like a normal teenager and not have seizures.

I did that like a champ as well. Looking back on all of this, epilepsy was a twisted blessing in disguise. It helped fire my desire to test limits and show people that you can do what you put your mind to. Maybe that is why I excelled in sports and ride a motorcycle. I sure showed them, even if I had to have a pee pad over my beds mattress until I was 15. I think some of my friends should have invested in one of those during their drunken college days as well.

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I dreaded the first day of each school year because I knew the teacher would have to explain what to do if I had a seizure to the class. I did not want to be known as that kid who passes out randomly and pisses their pants but that was my reality. I dealt with the illness by turning it into more of a joke with my classmates which really helped. I remember waking up after one of my episodes in second grade and saying “sorry you all, I just wanted to not learn today.”

One perk was that my dad would let me play hooky from school if I had one during the night to be his sidekick at work for the day. Our family dog also was allowed to sleep with me because she would alert my parents if I had a seizure during the night.

DA

Dis(sed)-Abilities

Perfect Work, Paralyzed Home Peanut

When and how did you first know that something was different, that your disability(ies) were present?

In college, my first year, I was in a relationship with my boyfriend. This is very personal! I became really obsessed with contracting HIV after my mom died.

So I became really obsessed with any way I could have been contaminated by my mom; I would look back to past instances where I could have contracted; I was a self injurer. Maybe the razors I used.

Also, my mom was a diabetic, so I would worry about the needles and also her open wounds that I would dress. It affected my relationship with my boyfriend very negatively; I stopped having sex with

him. I feared contaminating him. My OCD obsessions are and were mainly associated with death and contamination. In the last couple of years, it has grown to sickness and violence.

When I think back on it, I can pinpoint my first episode. After college, I had to move in with my grandparents. There was one day that I was obsessing about my grandpa being sick. I was scared that my grandmother, having to go to work, would not be able to care for him, so I would have to. I had so much anxiety about it. I had a mental breakdown about it. I thought of all the ways he could get sick; whether it was undercooking his food or giving him

the wrong medicine, or even accidentally hurting him. I was so scared to be in the same room with him and talk to him. I remember cooking meat for him (this is what set it off); I took a knife and was cutting slowly. The meat was cutting easily, and I thought about my own tissue cutting as easily. This made me wonder if it would be easy to cut human tissue; this thought freaked me out. After that day, I obsessed about how easy it might be to harm my grandfather, myself, or anyone every day. This is one major reason I moved to Chicago.

Describe three things that are most impacted in your everyday life by your disability(ies).

First, my sleep. I have trouble falling asleep. I will find one thing to obsess over, and it is always right before I fall asleep. This makes it hard for me to enter deep sleep since I might have negative

my OCD is intrusive thoughts, meaning that even though I can control my thoughts, I cannot stop thinking. It is one of the hardest things to explain.

It is like I can stop my thoughts for a second and know I am thinking something, but I am still thinking it. You can’t stop thinking, even if you are in control of the content.

Third, my motivation; this is a big one. My work ethic is solid and a bit insane, so I overwork myself with my job. I deal with perfectionism at work.

When I am off of work, exhausted, I become focused on my OCD. Work and OCD can be two separate things; it’s like I am two different people. At work, actually, my OCD is perfectionism and it’s a good thing! Due to fear of being anxious about taking action (outside work), I often do not want to do anything, like going out with friends. This keeps me at home, for example. But when I am at work, I

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I cannot just turn it off, that is not the way it works. People get frustrated at me. My father hurts when he has to see me with anxiety and OCD. It has made him cry several times to see me so scared. feel normal. Work allows me to focus. I am often so exhausted from being perfect at work that when I get home I don’t want to do anything. My OCD is like, “Don’t go out in public, what if you have an attack or think of people dying?”

Second, my moods. Everyday, my mood is based upon how anxious I am. One day I might be fine with low anxiety, yet another day I might be very anxious. This affects how I interact with my sister, roommate, boyfriend; this overall affects how I interact with others. For example, when I had an episode in the beginning of October, based around the fear of people dying, I would look at a person and imagine them dying. I didn’t know what was happening and why. So I secluded myself due to my fear; it affected my relationship with those closest to me. I wasn’t talking to anyone. I cried everyday; I was paralyzed with fear. One of the symptoms of

What is one thing other people do that is frustrating or difficult?

My biggest thing is people just saying “stop.” Like it’s easy. This is my entire life; they don’t understand that if I could simply stop it, I would! The quality of my life is significantly reduced due to the impact of my OCD. My dad struggled a lot with being understanding. For example, at a point when this started in October, I was prescribed Klonopin, which you take as needed for anxiety, I was scared to take it. Thinking of taking this medication actually increased my anxiety. I as scared of addiction.

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thoughts when falling asleep. Also, I will often wake up in the middle of the night with racing thoughts.

Due to this, most mornings I wake up super fucking anxious. My dreams are also affected by anxious thoughts.

I obsessed over this possibility. I did this rather than taking it. My dad could not understand; he just wanted me to take it. He just wanted me better. A lot of my OCD is “What if?” and he has trouble understanding this.

I have a lot of trouble when people don’t want to talk to me if I am having a lot of anxiety. It is rough; others want to make me feel better but often they cannot. I cannot just turn it off, that is not the way it works. People get frustrated at me. My father hurts when he has to see me with anxiety and OCD. It has made him cry several times to see me so scared.

What is one thing other people can do that would help?

Being able to put talking to me for a long period of time. This is a lot to ask of somebody. I usually cannot feel better about something after only talking

Is there a story you would like to share, something that stands out?

Imagine waking up, everyday, with the fear that you are going to get hurt or someone else is going to get hurt. In addition to this, it is replaying over and over and over in your head different scenarios that can happen, not just with friends and family, but anyone. On a crowded train, there are many people that you can imagine dying. This is not so much a singular story but a story of my everyday. It is such a difficult and complex disease. It is an illness, a chronic. There will be good and bad days. OCD is so stigmatized that often people cannot be there for you when you might need them.

And, lastly, is there a humorous or fun story you would like to share?

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It is such a difficult and complex disease. It is an illness, a chronic one. There will be good and bad days.

A funny story involves my dentist fears. I am so fucking scared of the dentist! In order to go, I have to mentally prepare myself and tell myself I will not cry, that I will be fine, that the dentist likes me. Yet the minute I step into the reception area, I start to cry.

What is one thing you most miss that your disability(ies) makes difficult or prevents?

So the second time I went to a certain dentist, they told me I needed nitrate gas, or laughing gas. I cried the first time so much that I scared the other paitents! I had to have a tooth removed, I was super scared. I went in and I started to cry before they did the nitrate gas. Then they put the gas on me. I started to talk about my job and how I thought that everyone who was in my facility needed a little backpack filled with nitrate gas that they could breathe in all day. I wanted them to be happy like I was! I then told my dentist and dental assistant that they were the best people on the planet and hugged them. The nitrate gas is pretty great.

My goodness, this question! I cannot even tell you what it would be like to NOT be worried... about everything. I cannot even imagine not being scared of things. The reality is, I am scared of everything.

I can find scary things in everything. I really limit myself from having a better quality of life. So I suppose I miss a higher quality of life, of being more social and feeling better about myself. I am limited in so much. For example, I see people travel and do amazing things like that, and I want to do them but I am not yet able.

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about it for ten minutes; I need more time. Some processing does help alleviate obsessions. People can help me verbally process things. Regardless, there is not a whole lot others can do unfortunately.

To me, I need a great support system. It’s as simple as: “I get it; that sucks.”

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Jasmine Revolution and Southern Belle

Oh Sh*t Now Overcoming Toxicity in Relationships

They crippled, paralyzed, and disabled... me.

Southern Belle: There have been temporary and long-term disabilities in my life, all related to chance or accident. I have broken my arm, deal with dyslexia, and have other issues.

Had someone asked me years ago if another person would be the main cause of disabling me at some point, I would have assumed, “sure, maybe through a physical accident of some sort.� But that is not what happened. For many years someone intentionally

disabled me physically and emotionally. I was in an abusive relationship that was more paralyzing than anything else I have experienced.

The first couple of years I can hope that my ex did not intentionally cause me such distress. I really think that we were very much incompatible yet very in love through our entire relationship. Our draw to each other was greater than the growing issues that resulted

from our attraction. But in the second year, there were so many instances where I would share how their actions and words were affecting me negatively. About half the time, they would seem to understand and even apologize, whereas the other half the time they would get more upset that there was a chance that what they were doing could be their fault. Indeed, their behaviors and expression were more and more attributed to my responsibility, as in whatever negative things happened were my fault, no matter what occurred.

they didn’t want me to change, which they proclaimed, why constantly give reasons for me to change? I tried so many times to understand why everyone else in my ex’s life got such royal treatment but me. They were a different person when we were alone. It hurt a lot.

This took a terrible toll on me. I was terrified of making mistakes, because when I would, a lot of attention was paid to even the most minute details of how I went wrong. Besides often receiving feedback of how I should change, my ex constantly and more and more over the course of our relationship reflected back to me negative things about myself and behaviors. Often this happened on a daily basis. Everything I did was under scrutiny. What I wore, what I ate, what I said to a friend or coworker; I would come home from work or our time apart and always wonder what would be next? What would they find wrong with me, my actions, or my expression?

Jasmine Revolution: You know, Belle, I never thought of it that way before.

Disabling. I think it might be hard for some folks to understand how relationships can be disabling and some of those folks might even be triggered by the usage of that word because it may seem like we don’t fully understand or we are not being respectful of “true” disabilities. To folks like that, I would say that it’s hard to understand how crippling (and I do not use this word lightly) an abusive relationship can be.

These fears were debilitating and took up a lot of my time and energy, whether or not my ex would indeed focus on something negative. Now please know that I am not suggesting that negative feedback or constructive criticism is at all bad. I don’t mind it. Sure there are stressful times or tough days where negative feedback seems awful, but feedback helps us grow. With my ex, I was quick to realize that something was off (and slow to actually leave- that took years) about how they reacted to me. I felt like a punching bag.

After two years in our relationship, I would sometimes just break down from stress and try to reach out to my ex and express how they were making me feel. Every time this would happen, I would have hope again that my ex would back off. I would even ask why they were still with me if so much of what I did and who I am bothered them. It didn’t make sense to me; if someone was so often angered by me, why stay with me? If

I felt like I was crazy in that relationship because, similar to you, I was always somehow wrong no matter what I did or said. And because there was no else to tell me that I was not crazy, I believed that I was wrong and that I could not be trusted and that even I could not trust myself.

One of the most important things a person can do is to trust oneself. Why? Because if you can’t trust yourself, you will never believe that you can make good decisions and you will rely and depend on others to make decisions for you and about you and your life.

This is what happened to me. I stopped trusting myself and instead I trusted him. I trusted in his opinions and in his decisions. I remember thinking at times that his decisions and opinions were somehow wrong but of course I was crazy and I could not trust myself so rather than stand up for myself, I let him make decisions that were not in my best interest.

I gave up my power to someone else. I think that is one of the most disabling things a person can do. I look at folks with “true” disabilities and while they may have challenges, I often see the way they empower themselves and take control of their lives. They do not let the challenges that life gave them define them.

They accept and embrace their power and their own agency. This is not true for everyone with a disability but it’s funny how many perceive people with disabilities as weak and powerless.

So why do others give up their power so easily? Why do we give up on ourselves and let others define us and assign us destructive identities? When we are made

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What really stood out were the very few times I would have something to share that bothered me or was critical of my ex. I mean it was rare! I am just generally fine with a variety of things, and can tolerate many kinds of people and behaviors. So little actually causes me to need to address something. When I would, though, with my ex, a terrible fight would ensue 90% of the time. It was as if I was not allowed to comment or remark about them, but yet nearly everyday I would get criticisms, put downs, and lots of other negative energy and expression toward me. Again, punching bag.

I have more to say about feeling and being disabled by this person, by this relationship. But before I do, Jasmine, did you feel disabled? Were you disabled by your relationship and ex?

to feel as small as possible and when we start believing that we are not worthy of love or care or respect, we stop functioning in healthy ways. We stop living up to our full potential. That is a disability. What are some ways in which you stopped living up to your full potential because of your relationship?

Southern Belle: I stopped being me. I really did. Over several years I was made to believe that so much about myself was wrong, bothersome, strange, and not good enough for the person I loved so deeply that when I finally had the courage (and ability, yes) to leave, I realized I had lost myself.

I agree with you; losing access to yourself and your own power is incredibly disabling. If you do not believe you are able to do something, then you will most likely not try. Whether psychological or physical, it does not matter. One thing I have learned through years of experiencing physical, emotional, and mental disabilities is that yes, others can and will disable you.

I have an analogy that might be useful. If someone were to lose their tongue, they cannot speak, right?

Well, yes and no. They may not be able to speak in the most common way of speaking, but verbal expression from one’s voicebox and tongue is just one form of expression. Someone without a tongue can use sign language, or write, or make sounds with their throat or other body parts. If someone has the power to convince or intimidate someone else into thinking they have no voice, that is also like a disability. Like you said, if you do not believe you can or should, whether or not it is physical, mental, or psychological, then you probably will not “do.”

I also remember trusting my ex’s opinions and thoughts more than my own. I was convinced that they were more of an expert on myself than I was!

That is so scary, honestly, to think back to all the times when this happened. Yes, our families, friends, partners, and colleagues know us well; but know us better than we know ourselves? That is a stretch. They know us differently. But until someone can literally inhabit your mind, body, soul, and experiences, how could they ever know you better than you do? It seems we were both made to feel like strangers to our own selves.

I became physically sick, as I have mentioned in our previous columns. And to have more than one doctor proclaim that your real, physical symptoms are indeed not actually treatable physically is terrifying. It was my head, not my body is what they said. The fear of leaving the relationship, yes, the crippling, paralyzing fear of leaving kept me disabled from so many things

in my life, especially my physical health and emotional well-being.

I do not think I have yet learned of my “fullest potential.” What I do know, however, is many of my potentials, and in leaving that relationship, I deeply understood that many of my potentials, or my abilities, would not be realized. Much like the diagnosis of mental illness, where a person’s mind is branded forever, being branded by your partner as disabled in whatever ways is incredibly powerful and dangerous. People in your life are supposed to support you as you, right?

The more I experience with these topics, the more I realize that everyone’s abilities differ, and the idea of “dissed” abilities makes something that is a variety into something binary. You either are or you are not, you either can or cannot. This is so not true. How about you, what do you think, now, about ability and disability after your relationship?

B

I felt like failure for partner, friend, sist worker, and artist.

I could have done b Jasmine Revolution: I think about all the things that I was unable to do because of my relationship and it’s hard sometimes to not feel like those were wasted years of productivity. I don’t think that’s completely true. I did things. I learned things and if anything I learned how to survive and how to love more deeply. Honestly, I used to get angry about all the things I didn’t do and all the things I should have done. I want to say that it was all his fault. But it’s not. I and I alone gave him my power.

And it was also not all my fault. How can you take back your power when you’ve given it away and you’re not exactly sure if you gave it away of your own accord or if it was slowly pried from you, steadily over the course of time? How can you rise to power again when you are so diminished, so drained, and so very small?

They say that we create our own thoughts and emotions around situations and that our thoughts and emotions are what determine the type of impact those situations have on us. Our thoughts and emotions become reality even if they are not true. They say no one can make you feel anything unless you let them. And

while I believe this to a degree, it’s hard not to believe something when it is repeated to you over and over again. There is a word for it—brainwashing. I mentioned in our earlier conversations that none of my partners before or since him had similar perceptions of me. To say that people don’t have some kind of impact on who we are and who we become is dishonest and disingenuous. Is it all their fault? No, and it’s not our fault either. No one plans a disability.

I believed the horrible things he said about me and that impacted every single aspect of my life. I wanted to go to grad school but somehow I could never summon enough energy or motivation. I wanted to have better relationships with my family and friends but I had bought into his belief that my family and friends were awful, so my interactions with them were never going to head in the direction of healing. I wanted to get healthy but no matter how many doctors, naturopaths, chiropractors, nutritionists, allergists, acu-

B

r so long—as a ter, daughter, I don’t know that better than I did. puncturists, massage therapists, psychotherapists, and other health care providers I saw, I was still always sick because I was always stressing out about my relationship with him.

Would you agree or disagree, Belle?

Southern Belle: One last thought for this topic is about knowing thyself. My cousin reminded me that no matter how strange or severe a relationship might become, it is friends, family, and other forms of community that help us figure out what improves our physical and emotional health. They reminded me of this because for three long years I barely reached out to anyone; my ex forbade it.

I desperately needed to talk to others, to share what I was going through. People in your life that you seek often help empower you, not only to be yourself, but to overcome adversity. When you are intimidated by shame, violence, or fear to ask for help, this can be incredibly disabling. The one person I was “allowed” to reach out to, my ex, convinced me of my unworthiness in so many ways. They, as I have mentioned, paralyzed me from action, from actually defending myself against something terrible for me.

In relationships with others, whether they be with family, friends, coworkers, and so on, there are two dangerous things keep yourself safe from. The first is someone devaluing your flaws, mistakes, issues, disabilities, and illness. Sure, we all do things we might regret or hope to change, and there are parts of ourselves we might want to improve. But, when another person deems who you are to be bad, be cautious.

The second is someone that, through emotional and physical abuse, shaming, and intimidation, paralyzes, cripples, and disables you from not only being yourself, but pursuing your dreams, passions, and wants. I lived with both for many years, and though alone now, I would never want to go back. So please, seek and keep those in your life that do not do these two debilitating actions.

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It’s been exactly two years since that relationship ended. I look at back and it feels like a dream. I look back at who I used to be in that relationship and all I want to do is run to my former self and give that self a hug and say that it’s going to be ok. I’d like to tell her that she is so very loved and that even though she feels powerless, she will heal and she will take the reigns of her life. I want to tell her that she is not broken and that she never was broken. I want to tell her that there is nothing wrong with her. I want to tell her that I believe in her and that I love her and that she is already perfect with all of her flaws. I want to tell her to turn all that love and energy that she is expending on him on to herself. I want to tell her to love herself as fiercely as she loves him and to be as compassionate with herself as she is to him. I want to tell her that she is not a failure.

I felt like failure for so long—as a partner, friend, sister, daughter, worker, and artist. I don’t know that I could have done better than I did. No, I know that I could not have done better than I did. I kept beating myself up because I knew I could do better and I wasn’t doing better. I knew I had done better and the inability to not be as good as I once was, killed me and only proved that he was right about how horrible I was. I think we focus on what we can’t do on our disabilities and we are not forgiving of ourselves and that stops us from realizing that we are good at other things and it also stops us from realizing that we are perfect already. We disable ourselves and each other.

Bookmark Here Get Your Read On. Genre:

Price:

Novel

Released:

1973

Pages:

133

$12.07

Back of Book / Quotes: ”I am not mad, only old. . . .

I am in a concentration camp for the old.”

So begins May Sarton’s short, swift blow of a novel, about the powerlessness of the old and the rage it can bring. As We Are Now tells the story of Caroline [Caro] Spencer, a 76-year-old retired schoolteacher, mentally strong but physically rail, who has been moved by relatives into a “home.” Subjected to subtle humiliations and petty cruelties, sustained for too short a time by the love of another person, she fights back with all she has, and in a powerful climax wins a terrible victory.

Pros: Sarton takes the reader into the vivid decline that comes with old age. The novel is written from the main character, Caro, specifically through her journal entries. This allows the reader to get into the mind of one who is forced into an isolated, poorly managed nursing home. The first-person voice allows the reader to go through the emotional ups and downs, as well as the physical struggle. Sarton shows the reader the environment of a nursing home, especially the class dynamics between her and the nurses and the gender dynamics between her and the aging men. The first-person point of view clearly shows aged individuals as the “Other” and their internal perceptions and struggles with this.

Cons: While the first-person voice of the novel allows the reader to get inside the head of a woman who struggles with old age and being overpowered in the nursing home, one does not see others’ perspectives. Thus, the voice is limited to a white, educated female. If one is looking for a novel on aging and multiple oppressions that include other disabilities and/or race, this novel may not be your pick.

Or I could just come rolling in?

‘We have a staircase.’

Oh, okay, so it’s not wheelchair accessible?

‘No, we’re wheelchair accessible, just, there’s a staircase.’

“The

“Do you guys have any open calls for modeling? ‘From 3 to 4, just walk in.’

Just walk in!

Haha.”

by myself. I need nursing care.”

- Angela, Push Girls

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“Money is a huge stressor for me because I am not making much on my social security care and I need 24-hour nursing care. My insurance is not paying that. Where the heck am I going to get biggest that money? Something for me is times I have no idea.” that I cannot live

“There are so few jobs out there for people in wheelchairs, so the odds are against me. I understand that completely. I just don’t like hearing that something is impossible.”

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“I got in my car accident in 2001. I’d just signed with an acting and modeling agency. I was engaged. My life was practically perfect. I was coming back home to get fitted for my wedding dress . . . I lost my best friend that day, and my friend who was driving has had a really hard time with survivor’s guilt . . . The doctor classified me as a C-4/C-5 quadriplegic complete.”

“I decided to look for a new agent to help me restart my modeling career. The biggest challenge I will face with a modeling agency is that they’re not going to know what to do with me.”

Dis(sed)-Abilities

Teenage Hearing Loss Sweetie

It’s not every day that you realize you can’t hear the teacher that is right in front of the classroom teaching. This one of the ways I had realized that I did indeed have the hearing loss the doctors have said…

I’m just a regular 15 year old trying to get through the ways of life with high school and the struggles of not being able to hear people fifty percent of the time. What many people don’t understand is that even though I might not be able to hear you at times I may be reading your lips. I feel this is very helpful at times nut not so much on others. One time I had gone to a birthday party of a friend and couldn’t hear a thing, many people wanted to talk to me so

Have you ever found yourself doing something wrong because you heard the wrong thing? I have, I was at a friend’s house and we were going to see a movie. She had told me she was going to go get dressed and we could go but what I heard her say was that she was going to get her goat to go. It was funny to see the reaction on her face and even on mine. These are the most funny but embarrassing moment cause you never know if they are laughing with you or at you.

A very interesting thing about me is that I still can sing, even through all the hearing loss, not being able to hear certain things, and being half deaf. I feel

A very interesting thing about me is that I still can sing, even through all the hearing loss, not being able to hear certain things, and being half deaf. I feel this is a very good thing because singing is one of my favorite things to do and if I couldn’t sing anymore I don’t know what I would do.

B

this is a very good thing because singing is one of my favorite things to do and if I couldn’t sing anymore I don’t know what I would do. I do many things with singing as I am in choir at church and school but I also sing for fun along with the radio. I believe that you can do anything as long as you try your hardest.

Even though I might not be able to hear as well that doesn’t mean I can’t do the unthinkable.

DA

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I had to read the lips of my friend to at least figure out the logistics of what they were saying. I have also encountered the bad parts of being able to see the conversations of strangers that I really didn’t need to know.

I have very frustrating moments at times, think about this you are with a group of four friends and you can only hear one person at a time but four of them are talking all at once. You really want to know what everyone is saying but you don’t want to have to stop them to tell them. I believe it is really hard to let people know what is going on but they don’t really understand. This is why I like to spend time with the family on my dad’s side because they know exactly what I am going through and my uncle has even gone through it before.

Career Call Learn About the Workplace

Ma Note Taker P Services for Stu

1) Describe your job and its duties in one paragraph.

My main duty is to serve as the Note Taker Program Coordinator. I organize several excel sheets to organize the 200-300 classes that I hire note takers for each semester. Then, I hire students based off sign-up forms and coordinate their notes between their weekly submissions and the students registered with SSWD who receive the notes. Note Taking is a possible accommodation a student can receive through our office. Also, I assist in coordinating our Testing Center and helping with our Alternative Text Program. Along with the other graduate assistant in the office, I write accommodation letters at the beginning of the semesters for the students to give to their professors. Daily, I interact and communicate with professors, new and currently-registered SSWD students, and occasional parents. Lastly, I planned disAbility Awareness Week this November and collaborated with Loyola’s student-run Best Buddies group to bring speakers and events that promote advocacy and awareness around disabilities to campus that week.

2) Why did you get the job?

I received this position because they were hiring for a new graduate assistant to coordinate the Note Taker Program. I am in the Higher Education masters program and I received an email the spring before I began about this opportunity and I applied, interviewed, and received the great news that I was hired.

3) How did you get the job (online app, in person, nomination, etc.)?

I believe it was online--submission of resume, cover letter, and references. Then, it was a phone interview.

4) Did you hear about the job through word of mouth? If so, by whom?

I received an email from the Higher Education listserv about the posting.

5) Did you have help getting the job by inside recommendations?

No. 6) Are you using or did you use some of your education for the job?

Yes. I used my bachelors degree to meet the requirement of a 4-year degree. Then, since it is a graduate assistant position, I was also considered because I was beginning my masters simultaneously.

7) Is this a job for the long-term? Why or why not?

This position is just a graduate assistant position, so I am able to stay in it during my two years of the masters program.

8) Does the job and employer reinforce current social conditions or try to change them? How? Your thoughts?

I would say on a continuous basis we try to promote universal design and appropriate accommodations.

Throughout our disAbility Awareness Week, which is an annual fall semester event, we try spread the word of

arie Monter: Program Coordinator, udents with Disabilities advocacy and awareness to the campus through speakers, dialogues, resource fairs, and other events. Social change is not our main focus, but we are a safe environment where students can come and seek our services.

9) What are the strengths of the job?

First, getting to help students. Second, getting to take on some leadership roles. My supervisors are usually busy meeting with students, so I become a point of contact if a professor, parent, or student needs more of an explanation for things or situations.

10) Weaknesses?

While I get to help students, a lot of my work is done via email so I wish there were more in-person interactions.

11) Would you recommend this job to others?

Yes. I get to do a little bit of everything aside from my main duty as the Note Taker Program coordinator. I help with retention and success of students through notes, through my assistance with the testing center and alternative text program, and disAbility Awareness Week.

12) Share your most memorable experience(s) from the position; good, bad, funny, and ugly!

Probably coordinating disAbility Awareness Week this November. I got to meet a lot of people in the Chicagoland area who do advocacy and awareness work. I was able to closely work with several of our students to hold different discussions and dialogues throughout the week. And, my favorite was attending the Sign Language Presentation & Workshop put on by a member of the Chicago Hearing Society. It was very informative, interactive, sparked new learning, and an overall great presentation

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BROAD People

Message Me We Asked, You Answered

tell-a-vision visions & revisions of our culture(s)

Flirting (Push) Girl

Questions: • • • •

What stereotypes exist regarding disability and sexuality?

Would you or have you been romantically involved with someone who has a disability?

How do people in your life respond to your sexuality and disability?

What are other networks that positively depict and include people with disabilities, and how can they be supported?

Availability: Push Girls is available on Netflix and from other sources.

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In this clip from season 1, episode one of Sundance channel’s Push Girls, Tiphany explains and shows how she loves to flirt. Even though many might assume she is not attractive and/or sexual due to using a wheelchair, this instance proves this assumption wrong.

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Description:

Dis(sed)-Abilities

Uncle Bubba’s Post Bubba Weiler

Annie has blue almond shaped eyes, chubby cheeks, chubby legs. She has two teeth, golden blonde hair, the goofiest smile. Ten little signing fingers, two music-loving ears, little wet lips for cow noises and kisses. The infinite, crazy love of thirteen aunts and uncles, two (soon three!) cousins, four grand-

parents. The best mom and dad a kid could ask for.

Hands that clap when she wakes up, a butt that goes up in the air when she sleeps. A cry that will break your heart. A laugh that will make your year. Down Syndrome.

These are some of the wonderful things that make up Anne Kathleen Beazley. The parts of the whole, equally weighted, that by some miracle were put together to become the most delightful person I’ve ever known.

Annie is (we all are) a mosaic. The small, intricate, unique parts of her are beautiful on their own but together they create something bigger, more beautiful, transcendent.

You may see in Annie’s mosaic, a tile you’ve never seen before. It may be a different color, a different shape, a little shinier than most. You may be drawn to it; interested in or unsettled by its difference. You may find yourself focusing on this piece of her and I don’t blame you. It’s fascinating, unique, beautiful. But, please, take a step back. Expand your gaze.

You’re missing the show.

Looking at Annie and only seeing Down Syndrome is like looking at the Sistine Chapel and only seeing brushstrokes.

If you are willing to expand your gaze, if you are able, (really it’s pretty easy, Annie does most of the work for you) in front of you will appear the most magnificent sight. You will see a girl who in the morning opens her eyes, remembers the world exists and that she’s a part of it, and claps and squeals for joy. You’ll see a girl who always shares her food with her uncles. Who loves to make her parents kiss.

Who dances her heart out. Who lights up when her dad walks in the room. Who has some deep personal connection with the Muppets. Who can wash away your bad day with a smile and a pat on the back. Who has stolen the hearts of us all without saying a word. Who brings an impossible amount of joy to everyone she comes across.

You’ll see Annie. Beautiful, playful, happy, infinitelyloving Annie. In full view.

I remember the first time I laid my eyes on her, completely, fully. My eyes swelled, my heart pounded, my head became light, and I had to leave the room.

I was overwhelmed by the amount of love I felt for

B

Who loves to make her parents kiss.

Who dances her heart out. Who lights up when her dad walks in the room. Who has some deep personal connection with the Muppets. Who can wash away your bad day with a smile and a pat on the back. her and from her. I couldn’t understand how so much love and joy could come out of one little girl.

I still don’t really. But I have a feeling it might have something to do with that beautiful, unique, precious little tile.

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But please, don’t ignore the tile. After all, you wouldn’t, you couldn’t, ignore her beautiful blue eyes. It’s crucial, pivotal, essential. Without it something would be missing. Like Rome without the Trevi Fountain, Annie without Down Syndrome isn’t Annie. Rome would still be an impossibly amazing city, and Annie would still be my niece who I would love without end. But the Annie we’ve been given—and of this I am perfectly sure–is the best version of Annie there is.

DA

“When I was 22 years old I had a car accident. There was a car that cut me off. I hit the center divider head-on, and I snapped my back in half.

I remember waking up in the I.C.U., and my mother was sitting there. She said that the doctors said that you will never walk, or dance, again.”

“I was a professional hip hop dancer at the peak of my career. I grew up in the hood and it was a rough area. We lived around gang violence and drugs. I took my streets into dancing.”

“I was a struggling artist, and I did not have enough funds to pay my rent, so I was about to be evicted. I ended up selling myself for $500 that day.

When I left I felt so disgusted... used. I didn’t have any selfworth left. Right after that, I was on the freeway, and I completely severed my spinal cord.”

“Hundreds of people will be traveling from all over the world to perform in this event. I will be the only person performing in a wheelchair.”

“Do you guys have any open calls for modeling?

‘From 3 to 4, just walk in.’ Just walk in! Haha.”

“Once a dancer, always a dancer. I was gonna figure out how to make this contraption that’s glued to my ass work for me. I began to maneuver it, I began to learn different tricks in it, and before long, I was hip-hop dancing again, and I have been ever since.”

- Auti, Push Girls

words are useless expression/commentary through art

Forced Absence

is “missing� or different. In creating this piece, I wanted to outline a person’s missing body and presence with tools that have been made to improve abilities. I also hoped to remind the viewer of their own mental and emotional state with the mirror and straightjacket, two tools of constriction and idealization. Finally, the bell curve in the background signifies the use of eugenics, statistics, and norms to disable and devalue people.

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Description: Regarding disabilities, limitations, impairments, we often fail to see the person beyond what

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Artist: J. Curtis Main

MadAds Busted Advertising, Bustling Economy

• Who is included in most ads?

• What types of bodies are depicted in positive ways?

• What characteristics are targeted as needing solutions and improvement?

• Where is disability?

Disability

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Exclusion

“While white people are more often diagnosed with depression and are prescribed antidepressants, African Americans are diagnosed with schizophrenia at much higher rates and are also given antipyschotic medications more frequently and in higher doses.

They are often more institutionalized involuntarily, in part because racial stereotypes affect psychiatrists’ assessments of their ‘dangerousness.’”

“Instead of simply reporting a pain or displaying a rash, a fever, or a tremor, the depressed patient is most often subjectivized as such through the production of a narrative.”

“People of color, especially African Americans, are less likely to be diagnosed with depression or prescribed medication when they report their symptoms to a doctor; even in studies controlling for income level and health insurance status, the disparities are great.”

“Man of the m foundation of disability have analyz and disabili tandem, bu position t other

“For many Black women with depression, lack of access to health care, rather than involuntary administration of it, is the most oppressive aspect of the contemporary politics of mental illness.”

Survivors’ te monies demo the appalling which the label illness’ has bee deprive people omy, respect, man righ

- When Black Wome

An

ny most nal works y studies zed race ity, not in ut in opto each r.”

estionstrate extent to l of ‘mental en used to e of auton, and huhts.”

“In a more subtle way, the frequent use of ‘like race’ analogies in disability scholarship may also have the effect of opposing the interests of disabled people and people of color.”

“Disability studies’ emphasis upon observable manifestations of impairments makes it difficult to know how to begin thinking about a condition like depression, which is primarily a subjective experience.”

“The symptoms of depression, Boyd points out, often ‘mirror the stereotypes that have been projected onto Black women.’”

“Whereas most people in our culture would not question the validity of diseases like diabetes, cancer, or rheumatoid arthritis, skeptics abound when it comes to depression.”

“Being diagnosed with a mental illness means risking social stigmatization, involuntary institutionalization, and treatment with dangerous medications.

One the other hand, those who are not deemed truly mentally ill are often regarded as merely lingering.”

en Start Going on Prozac

nna Mollow

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“Black women’s emotional suffering is generally regarded as normative and unproblematic.”

Dis(sed)-Abilities

Believe in Yourself Anonymous

When and how did you first know that something was different, that your disability(ies) were present?

I was at work and had trouble breathing. My family doctor sent me to the emergency room. The next morning I woke up and was not able to walk. I was not able to control muscles in my body. My fine motor skills were not working. I lost my balance. I had tingling sensations in my body. I could not even hold my head up straight, touch my nose with my finger, nor move my fingers easily. They kept on ruling out different things and then they told me that they were not able to diagnose me. They knew the symptoms, but not the cause. One doctor told me it was in my head and I told him to go to hell!

Later, a doctor told me I had fibromalgia or some sort of autoimmune disease. I was scared at first to hear

all the things it might be; I got checked for MS three times, for example. It was scary to both not know and maybe know.

The most important thing I learned was once when I was watching Golden Girls and nobody believed Dorothy that she was sick. Remember to believe in yourself, and know that you know your own body better than anyone else. You need to believe in yourself before you really let others in. Everyone is not meant to be perfect, as in the perfect body or perfect athlete.

We all can contribute in our own ways, regardless of abilities.

Describe three things that are most impacted in your everyday life by your disability(ies).

I had to learn how to cope with what I could and could

not do. Just like a person that cannot see out of one eye, they use the other eye, or a person who cannot hear, they learn to read lips. Honestly, my physical therapist helped me the most. I had to quit my job and was put on disability. It really affected my family; my youngest child went to live with my sister and my oldest child went to live with their other parent.

I went through physical therapy for two years to learn to walk again. I had crutches for a long time. Part of my disability is as simple as standing with my feet apart; if I stand with them together, I will fall over. If someone were to barely move me while I am standing or walking, I will likely fall. My physical therapist gave me the best advice: she taught me how to cope.

One thing she taught me was not to overdo things; if I exert my body like most people, it takes weeks to recover. So I have to be careful in overdoing everyday things, such as shopping.

What is one thing other people do that is frustrating or difficult?

At least once each time I would be in public, like the grocery store, at least one person would always ask, “What is wrong with you?” Every couple of days someone would comment to me. It was not really their business. I would just think, “here we go again.”

Sometimes I would just make up responses, like, “Oh I just fell off a horse.”

What is one thing you most miss that your disability(ies) makes difficult or prevents?

Simply having control over my whole body- that I cannot walk far distances or jump even. Things that I used to be able to do that I cannot do anymore. I don’t really think much about what I cannot do anymore since this happened over 25 years ago. It is not like I lost my leg or hand or something more serious; I am grateful everyday that I can do as much as I can.

There are different degrees of ability. I don’t want people to feel bad for me; I feel very lucky.

I do wonder what will happen with me and anyone as doctors might not know how to treat us. There were many times where I felt that doctors simply did not take the time to get to know me, to understand me as gray rather than black or white. Just because my problem was not obvious does not mean it was and is not real.

Is there a story you would like to share, something that stands out?

When I went to Disneyworld with my family one time, I read about people that hired disabled people in order to jump to front of the line. That really upset me and made me mad!

And, lastly, is there a humorous or fun story you

What is one thing other people can do that would help?

Others should be compassionate; don’t ask questions.

Allow me to bring it up first! Please don’t use handicap spaces unless you really need to. Be helpful if I seem like I need help. How about help me with the door? If someone is coming after me, I hold the door for them. I think it is common courtesy.

would like to share?

I used to have to go up and down the stairs on my butt until I got control again! I needed a bigger butt!

Until I had strength in my legs again and learn how to use crutches, this is how I would go up and down the stairs!

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B

It is not like I lost my leg or hand or something more serious; I am grateful everyday that I can do as much as I can. There are different degrees of ability. I don’t want people to feel bad for me; I feel very lucky.

DA

“When we make people ‘other,’ we group them together as the objects of our experience instead of regarding them as fellow subjects of experience with whom we might identify.”

To build a feminist theory of disability that takes adequate account of our differences, we will need to know how experiences of disability and the social oppression of the disabeld interact with sexism, racism, and class oppression.”

“This theory should be feminist, because more than half of disabled people are women and approximately 16 percent of women are disabled, and because feminist thinkers have raised the most radical issues about cultural attitudes to the body.”

“Many people whose bodies cause them great physical, psychological, and economic struggles are not considered disabled because the public and/or the medical profession do not recognize their disabling conditions.”

“Disabled people share forms of social oppression, and the most important measures to relieve that oppression have been initiated by disabled people themselves. Social oppression may be the only thing the disabled have in common; our struggles with our bodies are extremely diverse.”

“D abled learn tha perhaps mos ied people d to know abo caused by

“I the abl ied saw the potentially the their future selv be more inclined ciety should b provide the r would mak people fully ed and con membe

“From the standpoint of a disabled person, one can see how society could minimize the disadvantages of most disabilities, and, in some instances, turn them into advantages.”

- Toward a Femini

Susa

Dis“Dispeople abled people at many, can participate in st, able-bodmarginalizing ourdo not want selves. We can wish out suffering for the bodies we do not the body.” have, with frustration, shame, and self-hatred.”

If le-bode disabled as emselves or as ves, they would d to feel that sobe organized to resources that ke disabled integratntributing ers.”

“In the split between the public and private worlds, women (and children) have been relegated to the private, and so have the disabled, the sick, and the old (and mostly women take “Idecare of them). alizing the

body prevents everyone, able-bodied and disabled, from identifying with and loving her/his real body.”

“I found that, even after a couple of years of illness, answering the question, ‘How are you?’ because a difficult, conflict-ridden business. I don’t want to alienate my friends from my experience, but I don’t want to risk their discomfort and rejection by telling them what they don’t want to “The disabled are know.”

“When health is spoken of as a virtue, people who lack it are made to feel inadequate.”

ist Theory of Disabilty

an Wendell

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not only de-valued for their de-valued bodies, they are constant reminders to the able-bodied of the negative body--of what the able-bodied are trying to avoid, forget, and ignore.”

Dis(sed)-Abilities

Tweezers & Blood: Repeat KBS

Obsession is something I deal with daily. I have not been diagnosed as OCD, but I had a therapist tell me in college that I had the symptoms. I will never forget that therapy session. They asked me if I ever tended to obsess with my thoughts and actions as a child. I immediately thought “no.� But just a few minutes later, I thought about all the times when other kids were playing and my playtime literally consisted of counting, organizing, structuring, and repeating what I was doing. More importantly, at that moment I looked back at my childhood and my self and for the first time, due to what my therapist was saying, thought something was wrong.

Now, years later, I know it is not a matter or right and wrong. You are you, I am me. If I have to count myself to sleep every night, then it is what I do, and yes, it is what I did as a child for awhile. For about

10 years of my life, I believed something was wrong with me, that I needed fixing. Psychology, friends, family, coworkers, and American society in general do an amazing job of pathologizing anxiety and obsessive tendencies. It took a LOT of deep introspection to come to terms with how I function. I do not think of anxiety and obsession as debilitating, rather, I think of them as unique gifts.

There are times when anxiety and obsession help me in life, and then there are times when they are absolutely debilitating. Do I really need to obsess over the texture of my nails for 30 minutes a day? Or bumps in my skin? Or on some project I am thinking of or doing? No, not really. I often lose time... I lose minutes and even hours due to anxiety. As the same therapist pointed out years ago, I do not stop going, or at least when I do, I sleep. I am often I

either fully on, or asleep. The therapist asked about relaxation, and honestly, then and now, it is an area in which I need much improvement.

When the excessive energy and thinking that I have becomes too much, I get anxious. And, often, in order to quell that anxiety, I obsess. For instance, when I am really busy, it is not uncommon for me to have a song loop over and over in my head all night long while I am in and out of sleep. This is one reason Lady Gaga and Katy Perry annoy me; their songs are so catchy that they end up on repeat in my mind. This is but one example of many. Sometimes I decide on the repetition, and other times, the repetition is quite random.

Texture is really big for me. I like things smooth. A couple of years ago, someone pointed out that when I shop for clothes, I touch everything I see. In fact, I touch everything first. The way my hair, skin, clothing, and surroundings feel to the touch is intense for me. For example, I must have my nails rounded. If I feel any jutting edge on my nails, it will be on my mind until I smoothen it. Likewise, if my cuticles are rough in any place, I will clip, pull, and cut them until they, too, are smooth. This is a problem because I have dry skin. So, on most days, my skin is not that smooth!

What really has gotten the best of me is skin. I do not like bumps. Bumps bother me. They could be an ingrown hair, a pimple, or just some inconsistency. If I feel a bump, I will think about it until I get rid of it. I do this daily. Usually this obsession is around clogged pores, and sometimes I will lose an hour or maybe even two hours trying to smooth my skin and nails. This is where my anxiety and obsessive tendencies, literally, drive me a little crazy. It feels like an endless cycle, an endless repetition that involves a lot of “just one more.”

Like many others, I do (what I think is) an excellent job of hiding my obsessive tendencies regarding skin and nails. If someone were to look at my cuticles

I have spent more time in the bathroom mirror since I was 15 than I even want to admit. Hours upon hours of pushing, pulling, cutting, searching, clipping, and relieving myself of anxiety. But is it relieving? It actually seems more like relief followed by anxiety then more relief and so on. To get rid of a bump is nice and feels good, but in order to feel good again, you have to find another bump, which causes anxiety. Notice the endless loop? Yep, I have lived in it my whole life it seems.

My aunt recently sought my advice regarding her child and their anxiety. Early in the conversation I “came out” to her as someone with sometimes intense anxiety and obsessive tendencies. She could not believe it! I let her know I try to hide it well. I was actually very excited to talk to her about her child, to sort of pass on the wisdom of my problem to her so that she can maybe try and allow her child to work through it rather than spiral into it.

I have three options, I have come to learn. One, the anxiety and obsessions take over, and I spiral into myself and losing time. Maybe the skin picking turns to cutting. Maybe the need to relieve myself turns to obsessive eating habits, where, perhaps, I do not eat at all or eat all the time. Maybe whatever obsessions that I might fall into eventually cause me to escape through suicide, or heavy drug use, or simply becoming a hermit. This option scares me the most, that of intense, life-gripping anxiety, compulsions, and obsessions.

Two, I seek therapists, psychiatrists, and psychologists who offer their dozens of theories and ideas as to what is wrong, how and when it went wrong, and the dozens of ways we could fix me. In this option, I foresee therapy and prescriptions until I die... prescriptions that alter brain chemistry and have side effects such as depression and lack of sexual appetite. WHAT!? A side effect of quelling my anxiety is to not be as sexual? No thanks. This option just seems so numbing and counterintuitive.

In order to be better for myself, I will find ways to be less myself? It seems that most psychology points to our brain chemistry, hormones, and even some life experience that make us who we are and what we do. If, actually, my anxiety and obsessive tendencies are who I am, I would like to embrace this rather than drug myself or pay lots of money and time for

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I find the following bittersweet. I carry nail clippers and tweezers with me everywhere. In my car, at work, at home, by my bed, in the bathroom, I have them always. They are sweet in that allow me to lessen my anxiety by fixating and obsessing. They are bitter in that they, well, allow me to do it! I sway, over the years, back and forth between caring and not caring about texture and purging. Luckily, I have also learned when to reach out for help if things go so far that I do harm to myself or others.

right now, well, they look terrible. But at least people are not seeing me in action. My roommate, lover, and a couple of family members might see me, but I often do it alone.

someone to mostly listen to me about my days. I have friends to listen.

And the last option, the one I find most peace with, involves a mix of the two. I live with my anxiety and obsessive tendencies just as I have since I was a child. In fact, I would like to return to the days when I was happily me and did not know I was easily diagnosable. I did not think something was wrong; I had

practices. This does not sit well with me. I am not comfortable with over 10% of the population being considered ill and diseased. I simply think we are different. We have something “extra.”

Recently, I have thought of an amusing reason as to why anxious people are in the gene pool. I imagine humans many thousands of years ago, with no electricity, much less technology, and far fewer numbers.

B

I did not think something was wrong; I had a great childhood even if I had to step on every crack of the sidewalk or count the trees every morning on the way to school (yes, every tree). a great childhood even if I had to step on every crack of the sidewalk or count the trees every morning on the way to school (yes, every tree). But, it is important to check yourself and allow others to also help in keeping balance. This is where therapy might come in. Therapists, friends, family, and others can help sort of budge me out of fixation, especially pointless fixation and obsession. These same people can also help me sooth myself away from gripping anxiety. I have had excellent partners, for example, who have put up with my obsessive tendencies and help “bring me back.”

This leads me to my last point. Anxiety and obsession are not terrible things. I have certainly found them very useful during studying, researching, and writing. My abilities to focus on something, such as a project or task or passion, are amplified by the way my brain works. Many people know me to often go steps beyond what others generally do. Some consider it “above and beyond,” others find it wasteful, and still others are annoyed by it. When I am in the moment, working on something intensely, I enjoy it. I really do. Somebody else might see me or even be working with me and be concerned. I understand how I can come off to others.

For so many years I tried to seek reasons for why people like myself have “extra.” In the US, anxiety and OCD are mental illnesses, according to many

I envision a small tribe or clan at night, sleeping in or near the woods. The people with less anxiety are sound asleep, or maybe they are off relieving themselves in the woods or searching for food. The people with anxiety are worried. Maybe they will get eaten by a predator in the woods. Or maybe a predator will come to where everyone is sleeping. I see balance in this scenario: the people with less anxiety take more risks and potentially get into trouble more often; the people with more anxiety are less likely to take these risks but are also less likely to find harm.

This idea calms me, actually, because it helps remind that we all have unique contributions.

I can certainly attest to how well this idea worked in my family. I have one parent who is much less anxious than the other. Having both of them in my life has offered quite a sense of balance. Maybe I will drink, but I will not black out. Maybe I will go on a risky adventure, but I will pack safely and send people updates. I will meet lots of new people, yet carefully decide who to invite into my close friends and family.

I like my anxiety. I like my obsessive tendencies.

Why? Because I have grown to like myself. The more I know me, the better able I am to treat myself.

Not as a disease, or illness, but as someone different.

And we are all different. And that is okay.

DA

“They “Rather than are all members adjust social enviof a psychiatry disability ronments to meet activist group known among differing bodily needs, their friends as ‘Mad Pride.’ This medical interventions seek to cure the indiactivist group is an international vidual ‘abnormal’ coalition devoted to resisting and body.” critiquing clinician-centered psychiatric systems, finding alternative and peerrun approaches to mental health recovery, and helping those who wish to do so minimize their involvement with current psychiatric institutions.”

“The emphasis on ‘objective’ data has created a preference for neuroscience and genetics at the expense of an array of cultural and humanistic styles of inquiry. This new scientific psychiatry, working in tandem with pharmaceutical funding, has gone on to create today’s dominant clinical model of psychiatry, ‘biopsychiatry’--whose emphasis is almost exclusively biomedical style diagnoses and pharmacological treatments.”

“Much of the suffering of different bodies comes from social exclusion, isolation, and lack of opportunity, along with the often pernicious side effects of a medical industry bent on aggressive intervention to achieve ‘normal’ bodies.”

“Mainstream psychiatry overexaggerates psychic pathology and overenforces psychic conformity in the guise of diagnostic labeling and treatment--which all too often comes in the form of forced or manipulated hospitalizations, restraints, seclusions, and medications.”

- A Mad Fight:

Psychiatry and Disability Activism

By Bradley Lewis

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“They do not see their mental difference as a disability, but rather as a valued capacity.

“Like the celebratory and reappropriative uses of the terms ‘Crip,’ ‘Queer,’ and ‘Black Pride,’ the term ‘Mad Pride’ overturns traditional distinctions and hierarchies.”

Feminist Fires Ryan Murphy, Writer and Director Major Works: As a Journalist: The Miami Herald, The Los Angeles Times, New York Daily News, Knoxville News Sentinel, and Entertainment Weekly As Creator and Director: Nip/Tuck, Glee, American Horror Story, and Open

Inspired by:

Television. As a child he had two passions: television and wanting to be the next pope.

As a teenager he was a part of choir, the theater department, and the school newspaper, all of which influenced his later careers.

Inspires:

Filmmakers, screenwriters, journalists, directors, producers, and actors, and most notably, underrepresented, devalued, and stereotyped groups and populations.

Personal Life:

Murphy grew up in Indianapolis, IN, where he was born in 1965. Both his parents were book publishers. Already immersed in theater, choir, and the newspaper, at 15, as a self-described “popular kid,” he came out as gay and was embraced. He grew up Catholic. Murphy majored in journalism at Indiana University, and after a stint as a journalist for several publications, where he mostly wrote about lifestyle and popular culture, he launched a successful career into film and television.

Importance to Social Justice:

Murphy is well known for including and portraying strong and positive depictions of underrepresented populations, such as women, LGBTIQ people, people of color, interracial relationships, people with disabilities, religious persecution, and others. Beyond this, too, his writing often, even through drama and entertainment, hits social issues head on. For example, his current highly successful series on FX, American Horror Story, in its third season mini-series “Coven,” includes storylines around racism, sexism, femicide, domestic abuse, and other topics relating to social justice.

Regarding disability, Murphy has not only included hired actors with disabilities, but has also incorporated able-bodied actors as having disabilties in his work. In the second, critically acclaimed season of American Horror Story, called “Asylum,” Murphy included commentary and storylines around the treatment of people with physical, emotional, and mental disabilties. In this season, Jessica Lange suffered dementia and Alzheimer’s, Sarah Paulson was mistreated as a lesbian, and many other characters are harmed due to difference.

In the first and third seasons, Murphy included major roles for actress Jamie Brewer, who has Down Syndrome in real life. Yet, in the third season, her Down Syndrome is not necessarily a part of her character; in other words, she is a character, not “the character with Down.”

“I find that people are surprised that I don’t date guys in wheelchairs. I prefer to date able-bodied guys.”

“I never thought I would hang out with other people in wheelchairs because I feel like it would be negative attention.”

“Being in a wheelchair does create an image in other people’s minds.

So, I think it’s nice if they see somebody that looks like they’ve taken an effort in their appearance.”

- Mia, Push Girls

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“I got paralyzed when I was 15 from an AVM, which was a blood vessel in my spinal cord that ruptured and paralyzed me from the waist down over the course of a half day.”

“It was like my whole body turned against me.”

“I think most people have not seen sexy in a wheelchair and that’s why they cannot fathom it.

Being yourself is really sexy, and confidence.

That is a huge turn-on.”

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“I was a very independent person before I became paralyzed. And because I was afraid that was going to be taken away from me, it is something that I really strive to keep.”

Karla Estela Rivera

Mama Says...

Mutinous Musings of an Urban Mami

From Empathy to X-MenChanging the Climate on Disability In 2011 and 2012, I ran the Youth Mentoring Plus Jobs program in Pilsen and Little Village. The Cliff Notes version is that this was a part of a larger program created by Governor Quinn’s office to enhance violence prevention efforts across the city and some suburbs, and geared towards the hardest to employ youth. It was part expanded education, part social capital building, and part community outreach work for 80 youth. It was part professional development and a first foray into Youth Development work for many of the 16 adults I hired as mentors.

a cost-effective way to bring in powerful speakers on a non-profit budget. But even more than that, it was a way to put faces to experiences, to give fresh perspectives from people from around the world and showing the youth in my program that from great adversity can come remarkable outcomes. They learned about growing your own food in the ‘hood from Ron Finley, learned about the importance of the Latino Vote and civic engagement from Maria Teresa Kumar, Executive Director and co-Founder of Voto Latino and other incredible speakers.

One of the tools I used a lot for my presentations was the TED Talks website. On one hand, it was

There was a point in the program when I turned the presenting over to the youth and their assigned

mentors. Each of them chose a topic. Lots of them were accompanied by a Ted Talk. But the most impactful talk came from Aimee Mullins, a double amputee who competed at the 1996 Paralympics. She tells the story of what she found when she looked up the word “Disabled” in a thesaurus. What she found was a long list of words that create the most somber climate, among them “crippled, helpless, useless, wrecked, stalled, impotent, castrated, senile, decrepit… see also hurt, useless, weak.” The antonyms were “healthy, strong, capable.” These synonyms were published in 1982.

When the youth reflected on this talk, it was clear that slide resonated. None of them were physically disabled and, at most, there were perhaps one or two that expressed a mild learning disability. Their empathy for Aimee stemmed from the words. Being a kid of color is not a perpetual woe-is-me story. There are some amazing things in education and community action happening in urban communities, but the claws of institutional racism, paired with crazy, discriminatory pontifications that can be posted in 140 characters or less, words can become weapons.

So the words that a young Aimee discovered when she looked up “disabled” in the early 80’s evoked a kinship between these youth and this articulate, athletic, and very able disabled woman. Partially because they know how difficult it is to stomach a lack of expectation. But in addition to that, it got them to reflect on the language they were using. In the very same fashion that saying that something was “gay” or other hurtful language directed at the LGBT community stopped, the use of words like “retarded” or “cripple” began to fade.

One of the things that inspired this piece was a quote

by Haim Ginott, author of Between Parent and Child

This quote resonates with me as both a parent and as someone who has taught youth. But you don’t have to be a parent, or a teacher to put this into practice. We all contribute to the creation of climate.

Assumptions, judgments, personal experiences, observations, and our own ignorance can create torrential storms or bring fresh air to any situation.

In this spirit, I think a lot about how I will teach my daughter how to create an inclusive and healthy climate. I’ve got the spiel down when it comes to culture, gender, racial and class differences, even addiction. These are conversations have been had in my family for years. Admittedly, I think a lot about X-Men and how the characters’ “mutations” lead them to moments of benefit and adversity. The series is and incredible pop culture icon for anyone trying to overcome stigma attached to being born with any abilities outside of what people generally consider normal. The story of coming to terms with their abilities (or mutations), adapting to their surroundings, and evolving with these powers is a universal tale for anyone that feels like the “other”.

I know that in the real world there are plenty of individuals that need a great deal of support in order to make it from day to day. Also, if every disabled person had Professor Xavier’s money, things would be really different. But the climate is changing.

There are women who run in extremely competitive sports with prosthetics. They are so successful that some of their competitors consider the prosthetic a performance enhancer. There are people who lay on various parts of the autism spectrum that run large organizations and have Jedi-like skills in language, arts and mathematics.

These super people aren’t mutants with blue skin, wings, or telekinesis. They are differently abled and exceptional.

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During my web search, some of those words did stay in, but there were also a few new words. Among them were “challenged, differently abled, exceptional.” If anyone knows me, they know I don’t like to sugarcoat anything. I don’t believe in the use of words to flower things up. Sometimes I think that political correctness can border on the side of “too careful.” Progress doesn’t happen when we walk on eggshells. I truly appreciate the difficult conversations that have been had across communities, especially in a society so obsessed with being able to categorize us little boxes in the demographics sections of surveys and job applications. Finding the right words can be tough.

that I read on one of the walls at my daughter’s school. It says, “As a teacher, I possess tremendous power to make a child’s life miserable or joyous. I can be a tool of torture or an instrument of inspiration. I can humiliate or humor, hurt or heal… I have come to a frightening conclusion. It is my personal approach that creates the climate.”

“Bad staring fails to make the leap from a place of discomfort, shock, or fear toward empathetic identification. This unethical stare, in other words, is lookingwithout recognizing, a separated stare that refuses to move toward one’s fellow human.”

“Positioning oneself in the public eye can be a strategy to ‘claim disability.”

“To be held in the visual regard of another enables humans to flourish and forge a sturdy sense of self. Being seen by another person is key to our psychological well-being, then, as well as our civil recognition.”

“Because staring strives toward knowing by reducing unfamiliarity, if it is not short-circuited, it can be coaxed toward transformative interaction.”

“Now that civil rights legislation has removed many barriers to equal access, people with disabilities are entering and being seen everywhere, from transportation, commercial spaces, employment to the political arena.”

“Understanding that people with stareable bodies can have livable lives contributes to a larger ethical goal of accepting and accommodating devalued human differences.”

“A stare is a response to someone’s distinctiveness, and a staring exchange can thus beget mutual recognition, however fleeting.”

Beholding

Rosemarie Garland Tomson

tell-a-vision visions & revisions of our culture(s)

Disability Awareness

Questions: • • • •

What disabilities are included? What disabilities are excluded?

How is diversity in general portrayed?

What is the overall message that the French EDF advertisement is telling the audience?

In relation to the company’s slogan, “Access for everyone,” what is the company trying to sell?

Advertisement link: http://www.youtube.com/watch?v=wzRQOfVvVh4

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This video is an advertisement by the French EDF (Électricité de France), an electric utility company. It portrays a society unlike the current one, in which the world is made accessible to the disabled and those who are not disabled are excluded and minoritized.

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Description:

Middle Eastern Musings Abeer Allan

A Dive Into The Dead Sea

Women Buried in Life: HELP ME! As I am sharing my story, with you.

Unfortunately it took me a while to decide on how to start this article, the idea is there, women with disabilities, but where to start, what to write, that was the tough part. I have searched so many articles and went through a lot of book pages to be able to out bring some of the issues women with disabilities face, but it turned out it was like looking for water drops in the desert. It saddens me, and it made me realize these are the invisible women. Their issues are not being

highlighted in a proper way.

Most of what I found was the repeated words; women with disabilities face double discriminations. But that wasn’t what I was looking for; I want real stories that will touch your heart before your mind. So I kept searching till I found the story, the story that broke my heart and made me believe what a

corrupted world we live in! A story that touches humanity, if there is any left.

Sept. 2013, Palestine A 21 year old mentally challenged young girl was beaten up then hung to death by her own mother ho admitted her crime after finding out that her unmarried disabled daughter was pregnant. Mentally challenged?! How could she be held responsible for such action and get killed in the name of honor? How about helping her defend herself, how about -maybe- she was raped?! What honor do we talk about exactly?

Honor and crime never walk hand in hand.

Oh no, wait! It is too late, the girl in this story is already gone since September, this is not the story that I wanted to share. I will seize my chance here, to tell you the story of a young beautiful woman who is disabled and abused, but can still survive, and I ask you to help her, and to look for everyone who is in a same state, and let’s give our help with whatever we can, please!

October, 2013 Hanan, a Palestinian woman who is mentally disabled, was left to live in a shack separated from the family house. She was forced by her step mother to join the living of the chicken and sheep instead of her family.

Found naked in a shack, the step mother tries to help Hanan put on some clothes before the media arrives and captures the scene. It was described that she is not giving proper clothes to fit her and she is left to sleep among garbage bags on ripped mattress -or what was once a mattress. Yet, the Ministry of affairs

Isn’t the step mother the main suspect here who shouldn’t be trusted with money as she could not be trusted with a life of a disabled woman? Is she being rewarded for taking the burden off of the authorities’ shoulders? Yet we still ask, what about Hanan’s case?

And the usual answer given by all authorities is “still looking for a proper institution for such cases.”

A never ending following-up process for a case that should have been held easily, if we have taken the time, long ago, to build institutions for taking care of the disabled. The follow up process would have been shorter, if justice has taken place, if the step mother was dragged to court along with whoever supported her not Hanan. Only if equality and human rights were given to all, this wouldn’t have reached this far.

After this has became a ghost hunting authorities, as it was all over the Palestinian media channels –not that it was well covered but okay- the police has decided it is about time to build a room , furnished room, for Hanan, yet separated from a house that should be her home. Seriously? Is Hanan off your shoulder now?

Now you can sleep at night?

By replacing a shack with a room won’t solve it! Hanan needs more than that, she needs to live with humans, to learn how it is like to be one after living for years with chicken and sheep! And yet what is funny, one of the news networks which mentioned what the police has finally done for Hanan, they were bragging all about the generosity of the police and how well they have treated Hanan neglecting the fact how long it took to build such a room, and most importantly neglecting the fact that this is actually not a solved issue, she simply needs an institution with facilities, nurses and humans befriending her! Now, where do we go from here? Do we flip the page and start fresh? Or do we go on with Hanan’s story and move her to the right shelter? I think it is about time we start looking for all the invisible Hanans and bring them out to life before it is too late, like the girl of September.

To watch a short video on Hanan: http://www.youtube.com/watch?feature=player_ embedded&v=L2bsPz1WNYI

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Hanan, a 33 year old young woman who lost her dad almost 8 years ago, has been living like this for a good number of years now, until Watan, a local news network, revealed her story, shed the light on her darkness. The story later on was spread among the Palestinian news agencies, actions were very slow, repetitive answers to her situations were; we are looking into it. Looking into it? Can’t anyone find her the right shelter? A place where she can find love, care and feel some security? No institutions were able to take her in, no organizations or authorities were able to take this issue seriously, and realize that she is a human being that is being abused. To them, maybe she is not aware of what is going on nor feels a difference, but to her, you have no idea how it feels like. So just help.

hears about her, sees her living and does nothing for some long time except giving the stepmother 1800 Sheqel (511 $) every 3 months to be spent on Hanan’s needs.

“General misconceptions that people have of people in wheelchairs: they need sit at home in dirty sweats and a dirty shirt playing one of those video games all day long, stinky and gross.”

“We’re used to rejection due to the wheelchair. It’s not something people usually look at in the job world and say, ‘Hey, we want you onboard!’”

“After I first got injured, I used to be so shy and insecure because everyone stared. Some people would just come straight out and say, ‘What’s wrong with you?’”

“I’m more physically fit and active now than I was when I was walking.”

“I have 26 inch rims on the side of my ass. It’s hard not to get attention.”

“I do not like to label my sexuality at all. I feel its putting me in a category, putting me in box, as the bisexual woman, or the straight woman, or the gay woman, or the wheelchair woman.”

“I definitely like to do things myself. I do not like depending on someone else and being vulnerable enough to even have to ask.”

- Tiphany, Push Girls

WLA (Re)Animated expression/commentary through art

Anna Stonum Papers

of and professional works by Anna Stonum, have not been transferred to the Women and Leadership Archives, they are still accessible at the Center for Women and Leadership. The document above is from the “Finding Aid” of the collection. As a graphic artist, activist, and one suffering from Friedreich’s Ataxia, Stonum, who earned a bachelor of fine arts degree at Mundelein College in the 1980s, advocated for disability rights in and outside of Chicago alongside her playwright husband, Mike Ervin. She served on the board of Disability Arts and Culture at the University of Illinois and on the board of the Progress Center and Council for Disability Rights. Stonum promoted disability rights through multiple areas of communication, whether it was promoting better accessibility on CTA trains or producing her artwork. She emphasized these rights not only based on her own struggle, but on others. Her focus on multiple oppression extended into her delegation with the National Association of Cubans with disabilities.

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Artist Background: Although the contents of this collection, which include both biographical information

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Description: Disability rights activist; Writer; Artist; Co-founder of the Chicago Chapter of Americans Disabled for Attendant Program Today (ADAPT).

Ad(vance) Advancements toward Positive media Inclusion

• In these various movies and television shows you will find wheelchairs, Down Syndrome, autism, Alzheimer’s, deafness, blindness, and cerebral palsy.

• If we only gain by including actors and characters with disabilities, why are so few represented?

• Do you support media that includes disability?

Disability

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Inclusion

AltStyle Katie Klingel

Musings of a Non-Normative Sex Educator

Sex and (Dis)Ability I recently watched “(Sex)abled: Disability Uncensored,” an online documentary that looks into the sex lives of several physically disabled persons, many of them college students. I thought about submitting it in our “Tell-A-Vision” content, but decided a full column might be better. This documentary is definitely worth the watch on its own, but I wanted to expand the topic. The documentary focuses primarily on sexuality awareness and how yes, disabled persons not only have those same desires, but act on them as well.

One of the most insightful and powerful comments I heard during the documentary is as follows, from Daniel Kodmur, a Disability Access Specialist of UC Berkeley: “Instead of trying to sell disabled sex as normal, which, in a sense, it is normal, I think

there’s a way to try and sell it in a way that is both “normal” and “weird,” “transgressive,” or “queer.”

Unless we face up to the fact that its really gonna scare the crap out of people, if we don’t face up to the scariness, we can’t find ways to deal with the scariness.”

As always, we run into the dehumanizing language of “normal” and “not normal.” Kodmur advocates utilizing the term “transgressive,” in a similar way that queer love, sex, and relationships have often been advertised. The general public does not (as of now) view sex among disabled persons as “normal,” and erases this possibility of sexuality completely.

Perhaps, if this sexuality is advertised as “queer,” “weird,” and “transgressive,” we can avoid the com-

plete sanitization of sexuality among persons with physical disabilities. This way, at least the topic is being broached, sexuality will at least make it onto the map.

What this documentary does well is open up the topic of sexuality and disability for discussion.

Recognizing that many persons, regardless of ability, are sexual creatures, this documentary focuses

on desires, emotions, and experiences surrounding sex. Most of the time, when sex and disability are discussed (especially physical disability), it is in the realm of capacity, technique, functionality, refusing to acknowledge the feelings and drives behind sexual activity. This is a mistake, and once again dehumanizes disabled persons, diminishing their humanity, painting them as just a disability.

is interested in learning more. The website also includes several stories from disabled women, their partners, and their families, and how they discuss sex, reproduction, or how they learned to have sex.

These kinds of resources, be them documentaries, articles, websites, or books are incredibly vital to avoid erasing sexuality in disabled persons. How can we, as able-bodied, privileged persons, refuse to acknowledge that we, as humans, are, for the most part, sexual beings, who want to explore our sexuality, with ourselves and others.

This is regardless of whatever ailments, disabilities, or injuries hold us back. As we celebrate and acknowledge sexuality in our society, we must not forget all who sexuality affects; desire does not discriminate based on ability.

Relevant Links: https://www.youtube.com/watch?v=qA020ShNQr8 http://www.sexualityanddisability.org/default.aspx

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For quadriplegic and paraplegic persons, we must remember that a loss in typical sexual function does not necessary mean a loss in sexuality. A question that is heard all to often, especially to disabled men, refers to whether or not their sexual organs still function. “Can you even HAVE sex?” But this question is irrelevant. Sexuality does not boil down to just one part of one’s body, it includes so much more than that. Other aspects of sexuality, including sexually erogenous zones, emotional connection, and physical touch can be heightened in persons with physical disabilities, allowing them to still have a meaningful, successful sex life.

A great resource for women with disabilities, their families, and their partners, regarding issues of sexuality is SexualityandDisability.org. Set up in an FAQ format, the website includes information on knowing and enjoying one’s body, sexual myths surrounding disabled women, the mechanics of sex (with one’s self or another partner), relationships, pregnancy, and sexual violence. It is a really amazing website that I would recommend ANYONE who

Emma Steiber

Queer Thoughts Turning Theory Into (Inter)Action

Destabilizing the AbleBodied, Heterosexual Model of Society I was regretfully watching a TV show on Netflix the other night titled, Don’t Trust The B---- in Apartment 23. First off, you might ask as a response, “Why?” I asked this myself repeatedly throughout the show’s first couple of episodes, which included the slightly mocked message that appearances and “bitchiness” are high qualities in society and that

to take advantage of an African American girl’s poor status can up one’s reputation. I was watching it more so because I was intrigued by what TV’s extreme version of society terms “normative,” what is accepted versus what is not, and what is inclusive versus what is exclusive. However, I came across an episode about how the New York party girl char-

acter, Chloe, dates a man who was hit in the head, causing him brain damage. The portrayal of the man who is brain damaged is extremely stereotyped-- he acts like a physical child with toys (making a brain damaged individual interchangeable with childlike mannerisms) and is used for the purpose of Chloe’s friend to get a job. However, when Chloe realizes he is brain damaged, she still dates him for his money.

In her words, she switches her “martini goggles” for her “money goggles.” Yet, even this does not suffice for Chloe and as soon as she takes off her goggles (metaphorically, of course), a CGI face becomes superimposed over the brain damaged individual and he literally turns into a monster. The message this gives? If you are not normative to society’s standards, you are a monster, a queer, an outcast.

able-bodiedness (the nonidentity that is accepted as fact) and heterosexuality that make up the presumed natural system. In his theory, the “system of compulsory able-bodiedness” that produces disability as the “Other” intersects with the “system of compulsory heterosexuality,” which produces “queerness.”

Thus, heterosexuality relies on able-bodiedness as a desired characteristic (2).

Discussing this theory and the systems connected with it, it is time to ask, “How can we apply this theory into practice?” I could give specific actions to take, like extending healthcare resources to all disabled persons, having resources on college campuses, and making all train stops accessible to disabled individuals. As valid as they are, though, I want to

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However, a significant part of McRuer’s analysis is his fusion of queer theory to “crip theory.”

However, a significant part of McRuer’s analysis is his fusion of queer theory to “crip theory.” Although recognizing both theories as distinct in their own struggles, which include visibility and invisibility, he emphasizes their connections as outsiders to the

encompass these specific actions into a larger realm.

And this realm is of community, collaboration, and intersection.

McRuer reiterates the Combahee River Collective’s statement that once “Black women were free, it would mean that everyone else would have to be free since our freedom would necessitate the destruction of all systems of oppressions.” This was and is still a significant statement in the struggle to overcome a white, male-dominated, heterosexual society.

However, McRuer points out that there are other intersections that must not be pushed below, like groups on a hierarchical chain of importance. And while McRuer states in his epilogue that a future is possible for the disabled and queer, one that is not utopian and is based on what changes can actually be made, I must emphasize that a major step to take is to not convert oppressed and minoritized groups into normative society through hierarchical representations and emphases on marriage as the ultimate cure. Intersectional oppressions should not be prioritized, but should and can be recognized individually, communally, and globally without a priority label stamped across in bold.

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There are shows that play with norms and place those on the outside at the forefront, such as in American Horror Story, in which a mentally-challenged girl is a part of a secret witch coven in New Orleans. However, disabilities are rarely seen as desirable and accepted human beings. If they are, they are alone, the sole individuals who are emphasized as overcoming struggles. There is nothing completely wrong with the latter, but these disabled individuals are still left on a stage, to be looked at as an outcast. In the introduction to Robert McRuer’s Crip Theory: Cultural Signs of Queerness and Disability, this is termed the “cinema of isolation” by Martin F. Norden. “Nordon’s comprehensive history of physical disability in film demonstrates how ‘most movies have tended to isolate disabled characters from their able-bodied peers as well as from each other’” (22-3). Thus, they are mainly showcased as the “Other.”

“Physicians, by the very nature of their work, often have a distorted picture of the lives of disabled people. They encounter disabled persons having health problems, complicated by the stresses of marginalized life, perhaps exacerbated by poverty and race or gender discrimination, but because of their training, the doctor’s tend to project the individual’s overall struggle onto the disability as the ‘cause’ of distress. More doctors have few opportunities to see ordinary disabled individuals living in their communities among friends and family.”

“In the 1920s, Margaret Sanger’s group, the American Birth Control League, allied itself with the director of the American Eugenics Society, Guy Irving Birch. The resulting coalition supported the forced sterilization of people with epilepsy, as well as those diagnosed as mentally retarded and mentally ill.”

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“Fetuses that are wanted are called ‘babies.’ Prenatal screening results can turn a ‘wanted baby’ into an ‘unwanted fetus.’”

“The media, especially the movies, distort our lives by using disabilty as a metaphor for evil, impotence, eternal dependence, or tragedy--or conversely as a metaphor for courage, inspiration, or sainthood.”

“The culture typically invalidates our bodies, denying our sexuality and our potential as parents. These cultural impulses are complexly intertwined with the issue of prenatal testing.”

“There is yet no prenatal test for deafness, but if, goes the ethical conundrum, a hearing couple could eliminate the fetus that would become a deaf child, why shouldn’t deaf people, proud of their own distinct sign-language culture, elect for a deaf child and abort a fetus (that would become a hearing person) on a similar basis?

- Disability Rights

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“But many parents of disabled children have spoken up to validate the joys and satisfactions of rasing a disabled child. The many books and articles by these parents confirm the view that discriminatory attitudes make raising a disabled child much more difficult than the actual logistics of care.”

“The attitudes that disabled people are frightening or inhuman result from lack of meaningful in “Toteraction with disday, many abled people.” disabled people view

themselves as part of a distinct minority and reject pervasive stereotypes of disabled people as defective, burdensome, and unattractive.”

“The dangerous void of information about disability is the context in which the public’s attitudes about prenatal “In diagnosis and selec- the United States this information void has tive abortion are yielded a number of unexam“Ofined assumptions, including the ten prospecthat the quality and enjoyment formed.” ofbelief life for disabled people is necessarily

“Disabilty rights advocates believe that disabled women have the right to bear children and be mothers, and that all women have the right to resist pressure to abort when the fetus is identified as potentially having a disability.”

inferior, that raising a child with disability is a wholly undesirable experience, that selective abortion will save mothers from the burdens of raising disabled children, and that ultimately we as a society have the means and the right to decide who is better off being born.

and Selective Abortion

arsha Saxton

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tive parents have never considered the issue of disability until it is raised in relation to prenatal testing.”

J. Curtis Main

Inside R Out? White? Male? Feminist? YES

They call me Helen Keller One might think that having the nickname “Helen Keller” is offensive and hurtful. But for me, it’s endearing. I have a bad ear, and without glasses, cannot make out detail beyond six inches from my face.

Without modern technology, I would be dead due to my ear conditions. Forgetting my ear for a second, without glasses, I would probably not contribute much to my family, work, or society, at least not like I can with help. I talk about my hearing, or lack of hearing, on a daily basis because I often must. So for dis(sed) abilities, I want to talk about mine.

Ask my friends and family how often I do not hear nor understand them, and they would say “daily.” I do not hear like you do. My hearing is different; it is special and takes a bit more patience and work from myself and others. My hearing ability can be quite frustrating to everyone, especially me. I have found, for over 15 years since the issue first came up, that

humor is one of the best approaches to my hearing issues. So, please, do not take offense to my nickname nor the humor throughout this column. “Helen says the right ear is the right ear...” this is how I get people to remember which side to speak to!

The not so funny part is how my left ear expired.

When I was 13, I had the flu, which was followed by months of an ear infection in my left ear. It hurt so bad! My left ear just kept aching and aching. Our family doctor put me on four antibiotics before finally sending me to an otolaryngologist (ear, nose, and throat doctor). Dr. Byers gave me a tube and sucked out the liquid and puss from my middle ear. A year later, during a checkup, he noticed something pearly still behind my ear drum, and although the tube fell out like it was supposed to, my ear drum never healed the hole. Something was not right!

So Dr. Byers ordered a CAT scan or MRI, and found one of the strangest words I know very well: cholesteatoma. It just sounds awful! And it is, especially if you have cholesteatoma that is aggressive AND that goes untreated for too long, which I did. Cholesteatoma are middle ear tumors that are made of epithelial tissue, which is a fancy way of saying skin cells.

Skin cells are aggressive; since they are our body’s defense to the outer world, they are incredibly fast growing and strong. But in the wrong place, they can wreak havoc. In my middle ear, encased on my facial nerve, the outer layer of a cholesteatoma can send out enzymes that eat through any tissue, including bone, in order to keep growing.

did I look up to him because he was mostly deaf and proudly rocked two hearing aids, but he was also gay and out, too. He gave me strength for both.

That is what happened to my poor left ear: a cholesteatoma ate through my ear drum, ear bones, and brain casing/skull. Dr. Byers then went in during surgery and removed a good portion of my middle and outer ear (ear canal). So what does this all mean!? My hearing on my left side is just a big mess. I am on my third ear drum, which has holes in it again. The cholesteatoma has come and gone three times over five surgeries, surgeries that leave scar tissue, pain, and problems. All in all, what I hear from my left ear is anywhere from 30-60% and distorted.

Ultimately, I’d like to get a tattoo on my bad ear that is simply “under construction” tape zig zagging back and forth.

Yesterday, my sibling Holly was driving and said “I am parking in the driveway.” I heard “I am barking at the driveway.” This happens a lot. Someone says something, and yes, I can hear them. But what I hear is distorted and/or partial. Reporting back what I hear is often comical. At work two weeks ago, my awesome colleagues Jo Anne and Emmanuelle were talking to each other and me, but on my deaf side.

What I heard had to do with “cunt.” I knew this was not what they said! I could not even say out loud what I heard; I simply looked horrified and giggly at the same time.

I am happy that I am not alone in this battle to hear, though. I have had two hearing aids, the first when I was 16. It was bulky, awkward, and for a teenager already wearing glasses, not the best thing to wear in high school. I was fortunate to have older friend Jeremy, though He wore two hearing aids. Not only

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the hearing impaired people do not, so they move forward with conversation and communication and we get left behind. There are so many times when I am stuck in part of a conversation that everyone has moved on from. I get bits and pieces of syllables and sounds, and while others keep going, I am trying to piece together a puzzle that I had no desire to get lost in.

Sometimes I just like to be around other hearing impaired people, not to talk, but because two hearing impaired people together means we are detached together. “Let the hearing people keep going,” I think.

At least Taylor and I can give each other the nod that means “yes, you are lost too?” “Great, let’s be lost together.”

There are endless funny moments. I love to dance, but a club or bar is a hearing impaired person’s danger zone. So if you lose sight in one eye, you lose depth perception, right? I really do think the same happens with hearing when you have partial hearing.

Like my niece and Grandpa, if there is a crowd or other sounds, I can only focus on one. The rest gets lost. So what do I do in clubs? I do what I want others to do for me and I look silly. I put my head to the side of my friends’ heads, so my mouth is near one of their ears, and I yell. I get funny and angry looks. I

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And this happens a lot. People are following one another in conversation, and I hear something totally silly, nonsensical, offensive, or just completely off.

Sure, my sister might want to bark at a driveway, and who am I to judge, but there are so many times, several a day, where I check in with people. “This is what I heard you say” is something I often employ. I want people to know that I am listening, even if what I sense is incorrect.

These days, I have Taylor and Grandpa to keep me hearing impaired company. They both have hearing loss in both ears. I very much adore our interactions.

These past few days, for our family’s endless Thanksgiving meals and events, I always know when Taylor and Grandpa cannot hear nor understand others. We detach, even if we don’t want to. All of a sudden, in a room full of people, you feel isolated. All the hearing folks comprehend, and do not always consider that

just imagine that they are wondering “Why is Curtis yelling so close to me?” I try to remember that that is what I need and probably not so much what they need.

At least I am modeling what helps me hear!

Let’s talk about hearing aids. Do you you have one?

Have you worn one? I highly suggest you try one out just so you can understand hearing impaired folks better. They honestly are not so great. Have you ever been to a bad concert, or heard crappy speakers? Hearing aids reproduce then amplify sound through digital means, so that when I wear one, you might sound like a speaker to me. A little speaker. A little speaker shoved in my ear. Trust me, it is strange. Add in buttons and volume and sometimes wearing them is worse than not. When others get frustrated with my Grandpa for not wearing his, I want them to back down until they have tried wearing them. Stick a hunk of plastic in each nostril and let me know how it feels. Wear it all day! Ears are meant to breathe, as in they need to get air. Hearing aids stop up the ear canal from getting air.

Trust me, it is an awkward sensation to have a stuffy ear.

And I didn’t even mention the whistling and squeaking.

Maybe my hearing aid is old now and this is no longer an issue (it is 10+ years old), but yes, they squeak sometimes or make high pitched screaming noises if they are not in your ear correctly. Like fingernails on a blackboard. If wearing someone’s hearing aids is not an option (actually, please, do not stick someone’s hearing aid in your ear!), just hover a hearing aid a centimeter away from your outer ear and listen. The world will sound like a stereo with odd background noises.

I said I was on my third ear drum, meaning it does not work all that well. I am also on my second artificial ear bones rod, made of titanium. Do you know what titanium sounds like when it vibrates in your ear? Titanium!

As in, it sounds like metal. As in, the world sounds tinny on my bad side. Mine does not work anymore for the most part. It is held up by pressure between my artificial ear drum that has holes in it and a window of my cochlea (you know, the seashell thing?). In other words, it fell in my middle ear. However, when I get sick, the titanium rod magically moves back into place, and my hearing jumps 30-40%! It is startling; I can hear again for about two minutes. Then I yawn or chew and it is back to one good ear. When I waited tables and bartended, we had a plastic bin for silverware. My coworkers thought it was hilarious when I would startle and yelp because the silverware hitting silverware really made the titanium shake!

Here goes the story of my Helen Keller christening. My dad and sister and I went on a motorcycle trip, from

NC to NY. In the middle of nowhere, we stopped to get gas, and of course the gas station was also an ice cream parlor. My dad asked, “Who wants ice cream!?” I, per usual, was the first to oblige. But I had left my glasses in the truck. So in order to read the flavors, I got about 4 inches away from the glass. I found this completely normal. But the attendant and my family thought I needed help. So the attendant asks, “You know, I can easily read those flavors to you if you cannot see.” Being prideful, I declined his offer and said “cookies and cream.” While he was scooping it, I walked about 4 feet away from the cramped ice cream glass to stare at the candy. While doing so, on my deaf side, the attendant said “cookies and cream” more than three times, about 6 feet from me. I did not hear any of these. My sister yells a staccato “Helen!” and I hear her. So now, in order to get my attention (which, trust me, if I cannot see nor hear you, ain’t easy), my family lovingly shouts “HELEN!” Or, if I do not hear them, they giggle and mutter, “Oh well, Helen can’t hear us.” It always makes me laugh and I feel in solidarity with Helen.

One last story. I have been playing in soccer leagues recently. Most of the teams do not immediately know I am partially deaf, and some of the players are quite serious, which means they yell commands a lot during the game. Picture me, running around, with about 3-5 teammates yelling and shouting at me to do various things. Until Coach Emmanuelle placed me with my good ear toward everyone, I would just kind of stare off and run off as I pleased. They got so frustrated with me until they knew I could not hear them!

Ultimately, I’d like to get a tattoo on my bad ear that is simply “under construction” tape zig zagging back and forth. Everyday people talk to my bad ear, and everyday I do not hear them. I used to even wear my hearing aid set to “off” as a reminder to people that something is “off” on that side. Many people in my life are well trained to walk and sit and communicate with me on my good side. But there is also a good laugh when, at a show or movie, I have to turn my head left 270 degrees to hear the person on my left, meaning I turn my good ear toward them. It looks like I am looking behind me, which never fails to make at least one person behind me uncomfortable that I keep looking back at them!

And after all these years, I look at the bright sides of all of this. When I have surgery, I get time off, painkiller, and lots of attention. When I sleep, I simply put my good ear against the pillow and drown out the world.

When I mishear people or do not hear them at all, we can laugh at the hilarity of communication. Most importantly, I have learned that this is not a disability at all. It might be considered a dissedability, but it works for me.

Bookmark Here Get Your Read On. Genre: Self-Help / Psychology

Price: $19.76 Released:

2008

Pages: 369 Back of Book / Quotes: Is Someone You Love: - Forgetful, disorganized, distractible, procrastination prone?

- Easily bored, irritable, a couch potato or always on the go?

- Prone to “mis-hearing” or “mis-remembering?”

- Addicted to shopping, tobacco, videogames, work, or worse?

Learn Why: - Most adults with ADD aren’t physically hyperactive.

- Most can focus - when their interest level is high - Too many therapists and physicians fail to recognize the signs of ADD - Symptoms can sabotage your finances, intimacy, and even your health - ADD awareness can save your relationship - and change your life!

Pros:

The author has been criticized for offering few solutions for the A.D.D partner outside of medication, as well as not catering enough to that partner. While it is advertised as a book for anyone effected by A.D.D, it really caters to the non-A.D.D partner in understanding the complexities of A.D.D and its symptoms. It should also be noted that the author is not a licensed psychologist, and is a freelance journalist who came to this book from her own experiences being married to a partner with A.D.D.

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Cons:

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This book is the first of its kind in that it specifically reaches out to couples, where one or both partners are living with adult A.D.D. It is the only book that partners of persons with A.D.D can look to for support in understanding, comprehending, and dealing with their partner’s disability in the relationship. This book has been praised as well researched, reader friendly, and includes insights and perspectives by well-known professionals.

Dis(sed)-Abilities

Are You Prepared for Disability, Unemployment, and Supporting Yourself?

J. Chris Main

Social security disability pays 130% of the amount you would receive (after a 6 month illness) at full retirement age. So if you are set to receive $1000 a

month for social security right now, if you were to receive disability, you would get $1300 per month.

You will only receive this if you are unable to work at most jobs. A gray example might be if you are a teacher and have a mini stroke that lessons your mental abilities. Maybe you cannot teach but you could run a cash register or help stock a store, perhaps you are able to work in some ways. Social security would probably disallow your claim.

Many claims are denied and lead to hiring of lawyers and appeals. Getting social security disability is often difficult, and as I mentioned, may not pay much.

Everyone should be careful in counting on this option if they were to fall ill, and even if they do receive it, it is hard to count on the low income for living.

theater tickets, termite control contracts, window replacements, tires, or just about anything does not necessarily require a person to sit all the time.

Yet if the policy was owner occupational it would have maybe paid to age 70. I was 60 at the time.

The reason it would have paid is because it is based on the job I had at the time (call center). I was no longer able to sit 8 hours per day. I learned from my mistake; even long term insurance agents like myself buy the wrong kind of insurance/coverage!

Another option is often an excellent one if you can purchase it or obtain it through your employer: group long term or short term policy. My son, Cur-

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Getting social security disability is often difficult, and as I mentioned, may not pay much. Everyone should be careful in counting on this option if they were to fall ill...

A better option is to buy your own long term disability policy. There is a possibility that both social security disability and your long term insurance policy could both pay.

For three months I did not work, hoping to get paid on this claim. Around this time, doctors and insurance company determined that I was able to do sedentary work such as selling insurance. I only got paid $1580 after the 90 day waiting period was up even though I had paid the insurance company $58 monthly for years.

The point is that I messed up by not buying an owner occupational policy and was not considered totally unable to work. After all, selling insurance,

Oftentimes the “head knockers� get this coverage but the lower eschelons of employees are not included. If you are not included, try and purchase your own disability income policy. Some decent companies I know of are Mutual of Omaha (my favorite), Prudential, or MET Life. Even if you change jobs, the policy goes with you. On the other hand, as in my son’s case, if the policy is provided by the employer, when you change jobs, the policy ends.

I recommend buying coverage that would pay at least 66% of what you currently earn. Keep in mind that no taxes are due on disability insurance payments if you paid for the policy. Yet if the employer pays for it, you pay income taxes.

I can be reached at jcmain123@gmail.com if you would like further advice on insurance related matters.

DA

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As for my own story, one year after retiring from the insurance industry that I was in for over 30 years in which I also owned then sold my own insurance agency, I decided to work at an insurance call center.

After only three months I had to quit due to terrible sclerosis back pain from sitting eight hours a day. I made a claim on a policy I had had since I was 38 that would pay $2000 monthly to 65 or 70 years old if totally disabled.

tis, has this provided in his benefits through Loyola University Chicago. If you are not in possession of a policy or insurance certificate showing this work benefit, ask for one or inquire with your human resources department about getting coverage.

Patrick Fina

Over the Rainbow Exploring a rich and diverse q-munity

Manic Coping Trigger warnings: depression, anxiety disorder, bipolar disorder, obsessive compulsive disorder, disordered eating, suicidal ideation, abusive relationship, and some generally really inappropriate comments folks have made to me If I could pick the time I felt the most anxious in my life, it would actually have to be the hours following the appointment with a psychiatrist who had determined I was off the charts bipolar. He told me how important it was that my diagnosis remained a secret. His advice was that I should only alert those

who would have immediate access to my new medications, or who saw my insurance statements.

Following the appointment, I went home and googled “gay and bipolar support.” At this time (it’s been a few years), I only found one or two websites that addressed the topic at all (there’s a couple better ones now, it seems). The one with the most information contained several comments, and the one I will always remember just said ‘that’s rough. don’t know anyone else who’s gay AND bipolar. good luck with that.’

I remember on very few occasions feeling as disoriented and nauseous as the moment I realized I couldn’t find any information on what I was about to go through.

I didn’t follow my doctor’s advice. I was open with the friends I had made through my undergraduate – a select few grew our relationships to be stronger and more supportive than they had ever been, but the overwhelming majority actually held a meeting without me present and discussed how medication made me ‘not fun’ and they ‘couldn’t handle being friends with someone like [me].’ The fallout included that anytime I felt strongly about something (be it happy, sad, angry, etc.) I was immediately asked by so many this following question: ‘Are you sure you’re feeling a real emotion? Or is this the, you know…talking?’

I made it through my undergraduate, graduated, and started life as an AmeriCorps member, which included a new health insurance plan – I had been privileged enough to have access to health insurance while I was in school. I thought things would contin-

I made it to the end of the year relatively successful, until my coworkers and I all participated in a mental health first aid training. One of my coworkers used information from the training as a joke on me in front of the office staff – pointing out a mistake I had made, stating it was indicative of hallucinations and then promptly asked me I was planning on killing myself before laughing while I started in disbelief.

I was supposed to be working at an organization that supported the queer community, yet here I was face to face with someone who actively declared their allyship to me as a queer individual but had no problems joking about some of the darkest times I had ever experienced.

I approached them and explained the impact the statement had on me – talking about the days I had woken up disappointed that I was still alive, the impact it had when you looked at the intersection of my queer identity - they looked blankly, answered with a deadpan ‘thanks for the information,’ and waited a while before sending me an e-mail apology.

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After explaining my diagnosis and past treatments, she did something most haven’t – actually just point blank asked how it was for me, and how it had been impacting me.

I was honest with my supervisor that this was going to have a significant impact for me. They did their best to understand, but there was no conversation regarding ways to help myself stay as healthy as possible, especially considering the staggering physical affects that stopping all of the medication I was on cold turkey have – cold sweats, migraines, shakiness, and dizziness were good days. The bad days I would have to fight not to black out at my desk.

Fast-forward to moving to Chicago – and being privileged enough to be able to have health insurance once again. By the time I used all the databases I could find, I was only able to find two psychiatrists in all of Chicago that openly stated they not only took my insurance, but also were open to treating LGBT patients.

Luckily, the one I selected is beyond stellar. After explaining my diagnosis and past treatments, she did something most haven’t – actually just point blank asked how it was for me, and how it had been impacting me.

I was honestly dumbfounded. It was the first time I

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ue as usual, but the insurance plan required all costs to be fronted by the primary – meaning me. To put it in perspective, a 30 day supply of the medication I was on (before taxes) was in the $800 range. Not exactly affordable on an AmeriCorps stipend.

had been able to talk about the intersections of my work and identities, and it started to shed some light on a lot of things I had not considered before.

Going deeper, we talked about a lot of my patterns of behavior, why I felt the way I did about others things, etc. – eventually, she leveled with me and explained that she didn’t think I was bipolar. More accurately, we talked about having a high level of anxiety coupled with obsessive compulsive disorder, and the anxiety-driven episodes of intense activity I look to as a coping mechanism that to many, could appear to be manic episodes.

This conversation really opened up how being queer and having a disability really impacts me.

The hardest part was revisiting years I had suppressed that revolved around my intense desire to assert control and compulsively control habits – and the easiest ones I could control were what I was eating and how much I was exercising.

I don’t like to put specifics of what I did in things like this because I know for me, I immediately start comparing myself to others and find myself reverting back to a place of figuring out how I could do it all over again. To put it simply, I lost over one third of my body’s mass in only about three months – and no one said anything. I then gained it back, plus some more about six months later, and have been going back and forth for more years than I really like to admit.

In a really messed up way, a lot of this stems from the pressure I felt as a queer male to be on par with what I thought were my peers. I unfortunately had been in an abusive relationship where my looks, body, weight, and intelligence were belittled and berated on a regular basis. I had gotten to a point where I believed the only way I could be loved was to be ‘tinier, cuter, tanner, smarter, and better.’ If I didn’t have a perfect body, I couldn’t be worth anything. If I didn’t exercise on a specific schedule, I was a failure. If I ate too much, I was horrible and deserved to unloved. When I fell short of what I wanted to do, I would often binge on exercise or food, oftentimes purging whatever I had consumed and becoming an expert at just how long I could stay in restaurant bathrooms before folks would come looking for me.

What’s terrifying is that I know that my story is not unique in this aspect.

Having been the kid that carried hand sanitizer and wouldn’t shake hands with anyone for a long time in conjunction with blows like that triggered years of behavior that has really affected and changed my daily life. Food and exercise are still a struggle. I know where most reflective surfaces are on my daily commute and apartment and do all I can to avoid them – I know if I can stare at myself, I will immediately go and start to identify all of the imperfections I know I have. In a bizarre way, I get pleasure and relief out of actively deconstructing and ripping myself apart.

I’m often late to just about everything, but not because I want to be. I wake up earlier than I need to, but some mornings I can’t convince myself that it’s worth it to get out of bed. Other mornings I feel the need to change my clothes a certain number of times before I feel like I can leave my apartment.

Because I like to think I’m an optimist, I want to end with a really great example of how folks in the queer community have supported me, and how I hope I can support my fellow community members.

I made the decision to be open with my disability status with my coworkers this year, and explained in detail all I had been through. I was expecting the usual nonsense I had experienced in the past (such as when people try to talk to you about how if you just do this one thing you’ll magically be happier and less anxious, but no really, my friend did it and it was life changing for her), but was floored when each person I talked to simply asked me, ‘what has this been like for you?’ After more conversation, they also all asked ‘what can I do to support you?’

Honestly, creating spaces like this to own my identities is support. I’m not sure what the point of owning all of this was, but I feel like it’s helping me and I hope it helps someone else.

“Diseases and illnesses of all kinds, including psychiatric conditions like autism, are simultaneously fully real, grounded in biology, and also cultural artifacts.”

“Presumably there have always been people who had the sorts of neurology and behaviors we now label as autistic, but insofar as they were remarked at all, they were parceled out to different categories (most notably various forms of madness, especially schizophrenia, or ‘feeblebmindedness’).

“Autism might be understood to represent a pathological excess of what the Western world most prizes--autonomous individuality, with its promise of liberty and freedom--reconfigured as what it most fears-painful solitude, isolation, and loss of community.”

“A group of people who have problems with communication and social relatedness may find it difficult to forge a social group, and may thus be difficult to constitute as a self-aware community within a social model of disability.”

“Autism might be understood as excessive individuality, autonomy, and self-reliance, normally understood as highly desirable traits.”

“People with autism are often richly attentive to minute details, sometimes at the expense of the big picture.

They have an unusual and distinctive ability to attend to details on their own terms, not subsumed into a larger totality--a propensity to perceive the world in parts rather than as a connected whole.

- Autism as Culture Joseph N. Straus

Table of Contents

“As many as 1% of all children are or should be classified as somewhere on the autism spectrum.”

“Psychological disorders rise and fall as much historically as much in response to cultural and social pressures as to any neutral, scientific observation.”

broadside Expressions in poetry via street literature style

disperfect J. Curtis Main

Cutting Clipping Pulling Smoothing Rounding

Burning Counting Restricting Losing Exhausting

Fearing Replaying Overthinking Protecting Preparing

Scrubbing Bleaching Disinfecting Organizing Rejuvinating

Perfect.

Perfect.

Perfect.

Perfect.

Checking Scraping Yanking Pushing Purging

Nudging Cropping Retrying Adding Neverending

Staring Reflecting Comparing Judging Minimizing

Asking Doublechecking Wondering Pondering Researching

Perfect.

Perfect.

Perfect.

Perfect.

Wasting Losing Hurting Forgetting Neglecting Destroying Looping Obsessing Worrying Overeacting Disperfect.

From Loyola’s Libraries to you. Assisting you in your search for information.

By Jane P. Currie

Ex Bibliothecis

Libraries and the Disabled: Services and Spaces, Strengths and Weaknesses

An Act of Congress in 1931 initiated a national program to provide braille and recorded books to blind readers. By 1952 the program included children’s books. It later grew to include music scores and today more than 300,000 titles have been made available to participants. It is an important part of library history and the long-held principle that every reader should have his or her book. Information about the National Library Service may be found in a fact sheet filled with interesting history and current service information.

New users may begin requesting materials at any time.

Library spaces, regrettably, are not always so accommodating. Wheelchair users face stacks with narrow aisles and shelves that tower to seven feet while also placing books just inches above the floor. They approach service desks at standing height that offer no seated alternative where communication is comfortable.

http://luclibrary.worldcat.org/oclc/18730828 http://www.loc.gov/nls/reference/factsheets/annual.html https://www.nlstalkingbooks.org/talkingbooksform/ http://www.ala.org/ascla/asclaissues/libraryservices

Table of Contents

The Association of Specialized and Cooperative Library Agencies developed a Library Services for People with Disabilities Policy that outlines what services, spaces, and collections should do for our disabled users. These changes are being made in libraries, new and old. We’ve got plenty of work ahead of us.

URLs for the links above:

Dis(sed)-Abilities

I, My Oppressor Sharon Caldwell

I spent almost two years trying to ‘fix’ and eradicate my pain. I thought I had power and control as I tried to dominate my body. I struggled and resisted. I read dozens of books and blogs by supposed ‘life coaches’ and inspirational mentors – trying to desperately suck up their enthusiastic positivity and hopeful health advice. I wanted their sentiments to seep into my pores, course through my weary veins, etch themselves into my heavy bones. I wanted a saviour, I wanted a formula – an easy “follow-these5-steps-and-reclaim-your-health!”

I binged on positivity until I overdosed on its saccharine sentiments. Little did I know that I gave up my ultimate power – self-compassion and love. I compromised my own heart. My heart closed off and I became numb to it, numb to my own deep feelings and fears. My endless attempts at a shiny attitude and somatic manipulation didn’t dam the pain coursing through my body. Rather, it reinforced the message that I was not trying hard enough or that I was not doing the ‘right’ thing, that I myself was somehow ‘wrong’.

It further pushed down and solidified my shame into a tight ball in my aching gut- the shame that I was not-okay-exactly-the-way-I-am. Even after years

of studying Critical Disability Theory and working within the field as an advocate.

I was now the Other. I had now become my own Oppressor.

The invisible threads of ableism are so silently titched throughout our culture that they are rarely noticed, let alone questioned. These narratives are imprinted so deep within our bones that even if we are aware of their presence, their very power causes them to continually play in our minds like a broken record. The language of overcoming pain and limitations reinforces the deeply ingrained idea that being able-bodied and ‘healthy’ is the ultimate privilege.

And even more dangerous, that it is both ‘normal’ and ‘natural’.

Power is rooted in language. If ableist language is a weapon used to disarm us, then we can reclaim our bodies and our hearts with words. We can (re)construct our identities through personal narrative and story-telling. We can take up the space we deserve, one syllable at a time.

DA

“It should not be surprising that race has become intertwined with the construction of special education, since race has been an essential ingredient in the construction of all aspects of American life.”

“We argue that the process of determining children’s eligibility for special education is anything but a science. Rather, it is the result of special forces that intertwine to construct an identity of ‘disability’ for children whom the regular-education systems finds too difficult to serve.”

- Why are so many Minority Students in Special Education?

Table of Contents

“As we will show throughout this book, the presence of multiple “Cer“In tain assumpfamily- and community-based special edutions of the American cation, the construct risks tends to increase the likelischool system present of disability has become particular challenges for hood of school-based risk, which the overriding metaphor immigrant children perby which differences in appears in the form of poor forming at the weak end of students’ behavior and the cognitive -abilities school achievement are teachers, overcrowded classspectrum.” explained.” rooms, negative social-class and ethnic biases, and a host of other detrimen“Struc“A tal influences.” tural features high rate of of schools ensure that referral to special schooling tends to reproeducation may be reduce rather than change lated to prejudice based the societal status quo, by preparing children to funcon combined racism, tion at the same societal classism, or cultural level from which they hegemony.” came.”

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