Volume 1, Issue
February, 2016
FROM THE EDITOR
H
ello! February brings thoughts of Valentines and cold weather. I hope everyone is staying warm! This month we’ll be talking about how to support the adults we care for when it comes to romantic relationships. It can be a difficult topic to address so we’re sharing resources that help us see what healthy relationships look like and how to keep our loved ones safe from abuse.
O
ur first concern, as parents and caregivers, is safety. We want our loved ones to have healthy relationships but, at the same time, we want them to be able to avoid abuse and exploitation. In this month’s edition we’ve tried to balance positive success stories, with tools to help caregivers address the more difficult aspects of relationships. Until next month,
Stephanie
Austin Underwood says he has loved his fiancée, Jessica Smith, since they were 4 years old, when their mothers met at a support group for children with Down syndrome. Thirty years later, the Dallas couple will finally tie the knot. “I want to marry her because I love her. She's my very own best friend,” Austin told NBC’s Maria Shriver. The couple have grown
Sexual abuse and people with intellectual disabilities Relative risk of abuse may be as much as four times higher for people with disabilities compared with the rest of the population, with people with learning disabilities at the highest risk. More information:
http://www.downsyndrome.org/practice/330/
from being playmates to prom
dates
and,
next
month, husband and wife.
“All I see is a big sun, or a god,” Jessica said of her sweetheart. “A sun — and the moon!” Their story reflects not only their love, but the determination by their mothers to give their children normal lives. http://on.today.com/1hNNWZ0
When My Son said “I Don’t Want a Girlfriend with Down Syndrome” on TV!? Sandra McElwee—www.whostheslowlearner.com/blog/ December 22, 2015
Mortified.
have some sort of disability. When he discusses his crushes on celebrities I ask, “Does she have a disability?” I want to introduce the reality that there
The conversation commenced, “Sean, you have had a
will likely be no romantic relationship with a person
few girlfriends, and all but one has Down syndrome.
without a disability.
Why did you say that to Rachael?”
Some may think I’m limiting Sean, but to allow him
“Rachael is my friend. I don’t like her like a girlfriend. I
to believe otherwise would be truly limiting his
didn’t want to hurt her feelings.”
opportunities for the relationship he desires. We are
Men. Even men with disabilities are clueless. This isn’t the first time I’ve heard men with Down syndrome say they didn’t want a girlfriend with Down syndrome…or even any disability. Sean was a babe in arms when we attended the book signing of Mitchell Levitz and Jason’s Kingsley’s Count Us In.
romantically attracted to people who have things in common
with
us,
beliefs,
interests
and
life
choices. If a typical girl was romantically interested in Sean I would have to question her psyche and possible ulterior motives. Sean has apologized to Rachael and they continue to be friends. Thankfully she has forgiven him, and I only hope the rest of the Down syndrome communi-
Mitchell explained in no uncertain terms that he didn’t
ty can forgive him…he thought he was being nice
want a girlfriend with any disability. The confidence our
and letting her down easy.
young men carry is admirable, but to employ those beliefs will leave them sorely lonely in the long run. I made myself a mental note at that time, that I would set the expectation for Sean that his girlfriends would
After seeing this scene on TV and another discussion tonight I have reinforced that simply saying, “I like you as a friend,” is the nicer response.
I’m overprotective of Monica, too. I’m glad her family has the means to protect her and care for her new husband as well. Neither of the couple can cook, admittedly. Nor are they allowed to go down to the beach to walk by themselves. They work when they can. They have friends over. They help around the house.
THE STORY OF A MARRIED COUPLE WITH DOWN SYNDROME By: Mardra Sikora
Monica and David, winner of several documentary film awards including Best Documentary at the Tribeca Film Festival. Have you heard of it? The film follows Monica and David, both of whom have Down syndrome, from just before their wedding to just after their one year anniversary. The documentary includes real time video of their day to day lives as well as interviews with Monica, David, and people from their families. Monica’s mother is adoring and perhaps over-protective. In fact, it’s shocking she allowed this movie to be made because she carries a lot of fear about the world. Which of course, conflicts with her desire to enable Monica to live a full life and explore her potential. (Sound familiar anyone?) Monica’s mother admits she has built her life around her daughter, and her daughter’s safety and happiness is her top priority. There are worse ambitions.
You know what I loved? I loved that there was closed-captioning for those of us who don’t speak Monica and David, but within their home it was a language everyone knew. I remember when Marcus was little and had friends over or in the carpool to-from school, he would banter with his friends. He spoke Marcus and they spoke Michael/Joey/etc. We parents didn’t always understand, but they did. They understood each other. I wish Marcus could walk around with closed captioning. Not for me, I speak the language, but for everyone else. Folks often give the impression, “If I can’t understand you, you have nothing to say.” I hate that. Closed captioning. Or maybe Douglas Adams’ babel fish. That would be the best. But I digress… So the question is, what did everyone else get from the story of Monica & David? Did the closed captioning allow people’s minds to open? Did mother’s sharing their hopes and fears allow people’s hearts to open? Did parents with young children with Down syndrome feel a burst of hope or a dose of dread at these outcomes, at this story of a life?
Regardless, I’m glad Alexandra Codina told this story the way she did. The clips were honest. There weren’t contrived emotions from contrived moments. *Advocate to the reasonable* it’s all we can really do, and I feel she did it well. Have you seen Monica & David? It’s on Netflix now and also available on DVD. Let me know what you think.
COMPETENCE Season 3 |Episode 2335 |Air Date 05/10/01 http://www.nbc.com/law-and-order-special-victims-unit/episode-guide/season-3/competence/2335
Benson and Stabler are investigating the rape of a young woman, Katie, with Down Syndrome but can't get any leads when Katie doesn't even understand what sex is. Her extremely overprotective mother is only concerned about terminating her daughter's pregnancy due to her intense fears that she is incablable of caring for another Down Syndrome child. She keeps Katie as sheltered as she can in order to have complete control of her situation but this hurts the needed investigation. When Katie learns her mother's plans she runs away with fellow Down Syndrome friend, Danny, who becomes the prime suspect as the father. When caught, the two are immediately taken into custody where Benson and Stabler learn Katie has been sexually manipulated by her boss at the local grocery store. Once he is arrested for rape the question then becomes whether Katie is fit to be a mother. When Katie's mother takes the case to court, her lawyer questions Alex's credibilty claiming that she makes premature judgements that Katie is capable.
Andrea Fay Friedman
Reality Check People with Down syndrome
ď‚Š go through puberty at roughly the same chronological age as their typically developing peers and experience the same body changes
ď‚Š experience the full range of human emotions and desires including the desire for intimacy and sexual contact are likely to vary as widely as their typically developing peers with regard to their 'sex drives'
Section 1: Family relationships for adults with an intellectual disability
There is a great deal of research out there about the relationships of adults with intellectual disabilities. We thought a look a one, fairly large, literature review would be a good place to start. The review was done in June 2003, by The National Advisory Committee on Health and Disability and The Donald Beasley Institute for Research & Education on Intellectual Disability in New Zealand. The research included in the review covers a global perspective. We’ve selected highlights from the report for this article.
“The review comprises four sections. Section one discusses the role and impact of family relationships in the lives of adults who have an intellectual disability. Section two provides information relating to friendship and has a particular focus on how adults with an intellectual disability can be supported to develop friendships. Section three extends the exploration of friendship into the area of sexual and intimate relationships. Section four contributes information relating to the experiences of adults with an intellectual disability who are parents.”
You can find the complete file, that includes references to all of the research articles, here: http://www.donaldbeasley.org.nz/ assets/Uploads/publications/NHCRelations.pdf
Some adults value the support they receive from their families very highly, while other adults find that families try to limit their independence too much.
How their family talks about their disability can affect how adults feel about themselves
adults with an intellectual disability need to be listened to as individuals with their own views and opinions
not all adults have a good relationship with their families, or can rely on them for support
families sometimes find it hard to cope with caring for their family member with a disability
older parents of adults with an intellectual disability sometimes need extra help
brothers and sisters often provide important support to adults with an intellectual disability
families who have legal authority over the lives of adults with an intellectual disability must make sure they encourage the adults to have as much control over their own lives as possible
Section 2: Friendships We need to be careful not to value friendships between people with and without disabilities more highly than friendships between disabled people Friendships between adults with an intellectual disability and the staff that work with them sometimes happen but it is important
not to see all relationships between “clients and staff” as friendships. It is important, however, for staff to support adults with an intellectual disability to make friends and to be able to meet with friends. This review has shown that:
friendship is important in the lives of adults with an intellectual disability
support in the area of friendships should be available to all adults with an intellectual disability who want to make friends with other people
support should be given to people to participate in community activities and also to develop relationships in the community
some adults with an intellectual disability will need a lot of support if they are to make friends and keep their friendships going
adults with an intellectual disability need more than one friend
adults need safe places where they can talk about sexuality
adults need access to sexuality education.
Section 4: Adults with an intellectual disability who are parents In the past people with an intellectual disability have often been stopped from getting married or having children. Many people think that adults who have an intellectual disability should never have children because they would be unable to care for them properly. This review has shown that:
parents who have an intellectual disability are a group of parents who face many barriers to keeping and raising their children
many parents will need special training and support in the area of parenting in order to be good parents. This support may need to be ongoing
intellectual disability services, family support services and other professionals need to be positive towards adults with an intellectual disability and avoid making assumptions about their ability to parent · many parents with an intellectual disability avoid disability services. This makes it necessary for ordinary family support service staff to have special training in working with people with an intellectual disability
intellectual disability service staff do not always have the skills to provide parenting support. Services need to make sure that they are able to meet the needs of parents with an intellectual disability
Section 3: Intimate and sexual relationships Families of adults with an intellectual disability often find it hard to see their sons and daughters as adults. This makes it very difficult for them to accept that adults should be able to lead sexual lives. Staff in intellectual disability services sometimes also believe that adults should not lead sexual lives. This review has shown that:
adults with an intellectual disability must be seen as sexual beings by families, service providers and the community sexuality does not just mean sex. Adults should be supported to experience a wide range of relationships
Anita Wadhwani, The (Nashville) Tennessean Published May 3, 2014 Accessed February 16, 2016 —http://usat.ly/1nca6J0
CHARLOTTE, Tenn. — Cheek to cheek, they danced so slowly their feet barely lifted from the floor, the cover band playing When You Say Nothing at All. The old country song is an apt description of Rosemary and Coy Maness's love story as they celebrated their oneyear wedding anniversary. It distills the essence of true love into its most basic expressions: a smile, a touch. "Without saying a word, you can light up the dark," the lyrics say.
decisions, sexuality and relationships remain among the last frontiers, advocates say. "This is like the elephant in the room that everyone walks around," said Beverly Frantz* (see next page), an expert on intellectual disabilities and sexuality at the Institute on Disabilities at Philadelphia -based Temple University.
The desires of individuals for relationships often run headlong into thorny questions about whether an individual has the capacity to make an informed decision about sex, dating or romance. Both Rosemary MaThey also run into state ness, 63, and Coy Malaws that criminalize a ness, 54, have intellecsexual relationship when tual disabilities, defined either or both individuals as an IQ of 70 or lower. are "mentally defective." Around them at the The laws are intended to spring dance were othprotect vulnerable people ers with similar disabilifrom exploitation, but they ties — people on dates, (Photo: John Partipilo / The Tennessean ) also have a chilling effect people hoping to find a on private care agencies and conservators, who fear date, people socializing with friends. Asked they could be held liable if a person in their care enabout her marriage, Rosemary Maness patted gages in a sexual relationship. her chest and said, "He's just ... my heart." Yet the rights of people with intellectual disabilities to date, to choose an intimate partner and to marry remain controversial. Decades into a movement to recognize that people with intellectual disabilities should live as independently as possible and make their own
A need for intimacy There's no policy set by Tennessee's Department of Intellectual and Developmental Disabilities, which provides care to 8,000 individuals. Instead, the wishes of parents or conservators and the philosophy of private care providers determine who can and cannot
pursue a relationship.
Many people with intellectual disabilities yearn for intimacy — for sex, love and marriage, said Katie Powers, an administrator with Developmental Services of Dickson County. Her agency provides caretakers for Rosemary and Coy Maness, who met at agency dances and outings, decided to marry and approached Powers with their decision. "Their IQ doesn't determine their feelings or needs," she said. "So many of our folks are lonely. They don't get a lot of touch or a lot of affection. And, to be honest, a lot of them want sex, just like anybody else."
agency has no authority to restrict relationships, "we keep running up against the law." "It's a sticky issue, because a group of friends cannot make that decision, a parent can't make that decision, a provider can't make that decision," Johnson said. "We have to go back to that statute. If the person engages in sexual relations and after the fact someone determines that they did not have capacity to consent, it's the person who engaged in sexual relations with that person who is in trouble, as well as anyone who facilitated it."
When Rosemary Maness first said she wanted to marry, Powers advised her to wait a few months to think it over. "But she just said, 'no,' and marched out mad as a snake," Powers said. "She knew her mind. And then Coy came in and said, 'She has cancer. Why do we need to wait?' " The couple married two months later, after some frank counseling on sex and intimacy, Powers said. But there are also individuals with severe disabilities who do not have the capacity to make such decisions, and for whom intimate relationships are not appropriate. A 68-year-old Columbia, Tenn., pastor faces rape charges stemming from allegations he had a sexual relationship with an 18-year-old woman with intellectual disabilities. The allegations came to light after the young woman told her mother about the relationship. While the relationship would raise moral and ethical questions even if the woman did not have a disability, it resulted in criminal charges only because she did. David Zeigler is being prosecuted under the portion of Tennessee state law that defines rape, in part, as when a perpetrator "knows or has reason to believe that the victim is mentally defective, mentally incapacitated or physically helpless." 'A sticky issue' The same law has had a chilling effect on private care agencies and on conservators, concerned about legal liabilities. Comcare is a nonprofit agency appointed to be legal conservator to about 1,000 people across Tennessee. Director Dr. John Johnson said that while the
(Photo: John Partipilo / The Tennessean )
Comare's position is that a psychiatric professional would need to evaluate an individual's capacity to make an informed decision before allowing him or her to embark on a relationship. Johnson acknowledges that could be a long, costly process.
Parents have their own concerns. Julie Ferrell's 38-year-old daughter, Heather, has had several boyfriends. Heather Ferrell is intellectually disabled and struggles with mental illness. She is largely nonverbal. "To Heather, having a boyfriend just means holding hands," said Julie Ferrell. One of her worst fears is that her daughter, trusting by nature, will be taken advantage of. Once, she said,
a man her daughter dated put his hand down her shirt, a frightening experience. "They see the world as it should be, but I see the world as it is, and there are a lot of undesirables out there," Julie Ferrell said. Limited guidance The state offers parents, guardians and agencies limited guidance. DIDD officials recently updated their manual for private agencies to say that "individuals have a right to have intimate relationships with other people of their choosing, unless such rights have been specifically restricted by a court order." Spokeswoman Cara Kumari noted that this is not an official policy, just a statement about the rights of people in their care.
Powers said a lack of guidance means that individuals' freedoms will continue to depend on their immediate caretakers and family members, rather than on an objective assessment of what each person could experience in life. "You talk to anyone here," Powers said. "The women all want to be married. Most never will be, but we can't take away that chance simply because we don't want to deal with uncomfortable issues." For Rosemary Maness, there's nothing uncomfortable about her relationship with her husband. "I couldn't love nobody else but him," Maness said. "Even if I would have to live alone, I would stay alone. It's only him.
"Relationships are personal matters, and issues involving relationships are handled on an individual basis," Kumari said.
For more resources visit our list on List.ly: http://list.ly/list/wOZ-supporting-healthyromantic-relationships
Watch this video from RTC Media (Research & Training Center on Community Living Institute on Community Integration) on YouTube: https://youtu.be/yuetrqdQOZk
Hear from her live at the 321 eConference— March 21-23, 2016 http://www.321elearning.net/2016-