Parent to Parent Magazine - Christmas 2014

parent to Parent MAGAZINE • CHRISTMAS 2014

reimagining disability ingrid jones new phd research looks at learning disability pride

inspiring hope

kylee black inspires and supports others one step at a time

community investigations gray ruffell investigates independence vs interconnectedness

parent to parent • christmas 2014

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Chief Executive

ANNE WILKINSON

Welcome to the summer edition of the Parent to Parent magazine. It is hard to believe we are in December already, marking the end of a very busy year for Parent to Parent. I would like to take a moment to reflect on some of our highlights for 2014.

This year we began a significant collaborative project in conjunction with Imagine Better and SAMS, with support from the Ministry of Social Development’s “Think Differently” fund. We held nine Renew workshops around New Zealand and two Second Generation workshops. We also produced online and print resources aimed at sending positive messages about disability to families. We will be continuing this work over 2015 with the facilitation of small local community ‘kitchen table’ groups for siblings, and the development and sharing of online resources.

Parent to Parent is actively involved with the Enabling Good Lives (EGL) demonstration and we are committed to the principles and values of EGL. We have held one ‘Good Stuff’ workshop in Hamilton and we were lucky enough to have families who are using EGL to support their family member, share their experiences.

The workshops aim to get families thinking about the possibilities for their family member that choices available through an EGL approach can provide. We will be holding more ‘Good Stuff’ workshops around

the Waikato next year so watch out for details in the near future.

We held our annual national conference and AGM in October and the guest speakers provided a real shot of enthusiasm to the proceedings. The regional groups presented their year in review; it was great to hear about all the great work done by our staff and volunteers for their local communities and families. A highlight of the AGM was the bestowing of Life Member ship to Tariana Turia.

I would like to reflect on the wonderful work done by everyone involved with Parent to Parent and offer my sincere thanks for their efforts. The regional coordinators do an excellent job supporting families at the grassroots level. The staff at the national office provide invaluable support for the regional groups. I’d like to recognise the forward thinking governance of the national board towards growing the organisation.

Thanks most of all to all our volunteer Support Parents and friends of Parent to Parent who are the ones delivering our services and supporting hundreds of families living with disability and health impairments.

Finally on behalf of everyone at Parent to Parent I would like to wish you all a safe and Merry Christmas and look forward to your continued support in the coming year.

Anne Wilkinson Chief Executive, Parent to Parent New Zealand

Mission Statement

Contact us

Empowering families and whanau of people with disabilities through support and information

Parent to Parent operates a network of 11 regional offices throughout New Zealand.

BOARD MEMBERS: Helen Johnson (P), Martin Gallagher (VP), Susan Warrington, Peter Campbell, Andrea Lee, Jim Craig

Patron: Rob Hamill Life Members: Heather Alford, Linda Davies, Sally Duncan, Ian Evans, Janice Gordon, Helen Henderson, Ray Murray, Gwen Sadler, shirley wass, Russell Wilkinson, Christine Zander, tariana turia.

The views expressed in this publication are not necessarily those of Parent to Parent New Zealand Inc.

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parent to parent • christmas 2014

parent to Parent MAGAZINE • CHRISTMAS 2014

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reimagining disability pride

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inspiring hope one step at a time

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united nations’ kiwi candidate

Ingrid Jones’ PhD research led her to investigate disability pride.

She is currently working on her thesis ‘Reimagining disability: Toward learning disability pride.

Since falling ill six years ago Kylee Black has become an inspiration and support to many as an example of what can be achieved by taking one step at the time.

Robert Martin is the first person with a learning/intellectual disability to be nominated for the UN Committee on the Rights of Persons with Disabilities.

community investigations

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Gray Ruffell, who has cerebral palsy, is also a marriage celebrant. He talks to us about his life philosophies and what drives his work with Community Investigations.

parent to parent new zealand is a not-for-profit organisation that supports families living with disability. we operate across all new zealand through our network of 11 branches nationwide and our national office in hamilton. all parent to parent’s services are free and confidential. contact us today to see what parent to parent can do to support your family.

parent to parent • christmas 2014

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reimagining

Disability Pride by nicolina newcombe

Ingrid Jones was inspired to start exploring disability pride when, as part of her PhD research, she stumbled across the book ‘Cripples, Coons, Fags and Fems’ by Ian Parsons. Ingrid is now working on her thesis called Reimagining Disability: Towards Learning Disability Pride.

Building on 11 years work experience in the disability sector, Ingrid is driven by the belief that we can do things much better than we currently do.

people who have a learning/intellectual disability.

Ultimately Ingrid would like to make complex academic ideas accessible to people with a disability and explore them collaboratively with people who are the real ‘experts’ on disability – Different lenses for looking at people with a people who have lived experience. Glen Terry, disability have evolved from medicalisation to an expert because he has Down syndrome, states normalisation through the social model and “[Ingrid] is always asking me currently to human rights People with a disability are for some advice.” frameworks.

Evolving lenses have led to major presented with challenges and Alex Johnsen also has Down unimagined new experiences syndrome and has been changes in the lives of involved in Ingrid’s research. people with a disability, such which help give new as deinstitutionalisation but perspectives. Research keeps Alex said “I think this it is further changes are needed showing people with a disability awesome because you know about disability pride to enable people with a are just as happy as anyone else. and what it means to you. disability to be fully included Ingrid’s research is to help in the community.

Ingrid hopes to push our views about disability a step other people to have their right to be proud, and further to celebration “as the theologian Nancy to be part of a group that helps you unite together.”

Eiseland said the way we imagine disability and Two important concepts which inform Ingrid’s disabled people must shift in order for real social research are ableism and pride. Ableism is a set change to occur.” of beliefs and practices which assert that there is such a thing as a species-typical person who is ‘normal’ and ‘abled’, and that we should all be that person.

Being different, such as having a disability, makes someone less-than or not fully human. Pride is refusing to accept the view that some people are worth less than others, and demonstrating that each person is valuable. Ingrid Ingrid wants people with a disability to “feel great argues that society has not accepted the proud about who they are, as they are, as disabled voices of disabled people yet because ableism is people.” For families she hopes that “the rest of still an assumption made by most people. the world will see just how wonderful your loved one is, as you do. Your loved one doesn’t need to Ingrid challenges the negativity around disability by reminding us that everyone experiences be fixed or learn to be ‘normal’.” disability at some stage in their life “how useful Ingrid hopes to be a link between academia and is it to think about something that will happen to Ingrid feels life can be enriched by being disabled.

People with a disability are presented with challenges and unimagined new experiences which help give new perspectives. Research keeps showing people with a disability are just as happy as anyone else.

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parent to parent • christmas 2014

every single one of us as ‘a problem,’ rather than embracing it as a part of life?”

For data generation Ingrid is going to do Participatory Action Research, researching collaboratively with a group of people who have a learning/intellectual disability. Participants will work together across a series of eight hui and will decide how to generate the research data. Ingrid and a co-facilitator who has a learning/intellectual disability will work with participants to explore ableism and disability pride concepts along with

looking at the language used to discuss disability.

The research has met with overwhelming positive support so far, although Ingrid said that at one meeting “a few people thought we should not use the disability label.”

Ingrid will be calling for participants in due course, if you want to know more about her research or would like to participate please email Ingrid Jones at irj2@students.waikato.ac.nz.

from left: alex johnsen, ingrid jones and glen terry

parent to parent • christmas 2014

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inspiring hope

One step at a time by nicolina newcombe

Kylee Black has Complex Regional Pain Syndrome (CPRS), a severe chronic illness which means that Kylee is constantly in pain. Google the McGill Pain Index, a common pain scale used for adults, and you will see CRPS on most charts, above childbirth and amputation.

Since falling ill six years ago Kylee, 27, has become an inspiration and support to many as an example of what can be achieved by taking one step at the time.

insights she has gained through her illness and Spirit Sparkplugs.

Maintaining a positive outlook is important for Kylee, focussing on the things she can do, not Following an injury which triggered the CRPS what she can’t do. Kylee’s personal motto is “one illness Kylee was bed bound for six months and step at a time and soon enough when you look home bound for three and a half years. During back those steps turn into miles.” this time Kylee wanted to find a way to keep For people who have a chronic illness there are contributing to the world around her. still limitations. Kylee explains what it is like to be Thinking about how meaningful getting messages in her shoes using the Spoon Theory. A spoon represents a unit of energy that from other people had been for her, Kylee started leaving Take opportunity when you it costs a person with chronic messages for fellow children can and it doesn’t matter how illness to do everyday tasks, and young adults on the big or small it is, run with it”, like getting dressed. People who have a chronic illness only internet.

Kylee decided to send out homemade encouragement books and have a set number of spoons each day. When packages as well. This idea led Kylee to set up an the spoons run out the person loses the ability to do anything other than rest. organisation called Spirit Sparkplugs.

Spirit Sparkplugs collects personalised gifts and handmade encouragement books from New Zealand donors and makers to send to children who have a disability or chronic illness in New Zealand and around the world.

Kylees family has supported her in every way possible over the whole journey. In the early days of her illness her family helped her physically with her daily needs, took her to appointments, and assisted her with rehabilitation and mobility. “My family have always been my biggest encouragers to never give up and to continue to fight for my dreams. They helped me to achieve my goal to go flatting and encouraged my independence wherever possible.”

Kylee has been flatting for two and a half years now and attributes the success of this venture to help from her family.

Kylee has done a lot of thinking about employment for people with disabilities “there are a lot of barriers and closed doors for people with disabilities, especially with lack of access to transport and that can really bring discouragement. Take opportunity when you can and it doesn’t matter how big or small it is, run with it”, Kylee states, “I would really encourage people to find open doors and In mid-November Kylee marked the six years since her illness began by participating in the push those.” six kilometre Around the Bridges event. Kylee Kylee has recently been speaking at a number completed her goal of finishing alongside friends of engagements to share the experience and

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parent to parent • christmas 2014

photo: natalie jellyman

and colleagues, who pushed her wheelchair after she has gone as far as she could go unassisted.

“It was an amazing experience to be able to compete in my first event, not just watch from the side lines. It’s a goal I have worked towards for many years, so crossing the finish line was an incredible experience, I felt complete elation and

joy! I feel so incredibly blessed and now hope to compete again next year” said Kylee.

To other people who have a chronic illness and their families, Kylee says three things: “you are not alone, perseverance pays off, and never, ever, ever give up hope.”

parent to parent • christmas 2014

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united nation’s

Kiwi Candidate by nicolina newcombe

In October People First life member Robert Martin went to Geneva to observe the United Nations Committee on the Rights of Persons with Disabilities review of New Zealand.

Robert Martin is New Zealand’s candidate in the 2016 election for the UN Committee on the Rights of Persons with Disabilities. Robert is the first person with a learning/intellectual disability to be nominated for the committee and if elected he will travel to Geneva three times a year.

from institutional care to travelling around the world and becoming involved with the United Nations. “I could have rested on my laurels but I chose to do something about the predicament of not only myself, but also of those around me” said Robert.

A number of issues came up in Geneva that Robert calls the nomination a privilege and is Robert feels are important for families. Supported looking forward to meeting new people through decision making, for example, is very important for the committee. It is really important for people families with children that find it hard to speak up. with a disability to represent themselves Robert Education is a basic human right that is not being believes, although he said that sometimes he finds met in some cases and Robert advocates for the it hard. “I know our world and right of all children to be I have grown up with people Society has come a long way, educated in a way that meets all my life, I have talked to a but there is still a lot more to their needs. “To me it is no ifs lot of people.” Robert feels or buts or maybes, education do. People with a disability are is one of the most important that even if he is elected there is still a way to go to get still shoved into boxes. There things in life.” full representation and points needs to be a lot more choices The committee made some out that people who have for families and disabled people. comments about issues that speech impairment are still affect families: being “wilfully left behind.”

• New Zealand Public Health and Disability The Committee may need to make some Amendment Act (also known as the Carers Bill) accommodations for Robert if he represents - the committee recommends that all family New Zealand “it would be great if the committee carers are paid the same and have the same could focus on communicating in plain language.” entitlements as other carers.

A meeting assistant is important for Robert to have • The committee expressed concern at the equal participation. barriers some children with disabilities Robert’s parents had a choice when he was born encounter accessing public health and of either bringing him up without any support or education services. This is likely to be putting him in an institution. Robert thinks that particularly true for Maori children with society has “come a long way but there is still a lot disabilities. more to do. People with a disability are still shoved into boxes. There needs to be a lot more choices • It was recognised that New Zealand is working towards better recognition for people with a for families and disabled people.” disability before the law.

The committee A biography has recently been published about added that immediate steps should be taken Robert called Becoming a Person, written by John to replace substituted decision making with McRae. The book chronicles Robert’s journey supported decision making. This means that

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parent to parent • christmas 2014

people with a disability are supported to make their own decisions instead of decisions being made on their behalf.

• The committee asserts that only adults who give their prior fully informed and free consent should be able to have a sterilisation procedure.

• The committee is concerned that sections 141, 142, and 144(2) of the Children, Young Persons and Their Families Act 1989 appear to discriminate against children with disabilities.

• It was noted that steps are being taken to include people with a disability in mainstream primary and secondary education but that this is difficult to achieve. The committee is concerned that there is no enforceable right to inclusive education in New Zealand.

• New Zealand was encouraged to implement anti-bullying programmes to address the level of bullying experienced by children with disabilities at school.

The Committee commended New Zealand on our Disability Strategy and the 2014-2018 Disability Action Plan. Recognition was made of the work done towards increasing captioning in the media, promoting New Zealand Sign Language as a national language, and the number of people with a disability who are studying at a tertiary level in New Zealand. New Zealand was praised for establishing an independent monitoring mechanism to fulfil the requirements of article 33 of the Convention.

National Manager of People First Cindy Johns travelled with Robert to assist him at the meeting in Geneva. Cindy said “it was a great experience seeing New Zealand being reviewed by the UN committee. The review will move New Zealand forward and we should all see progress being made.” robert’s biography is now available at all good bookstores, and can be borrowed for no cost from the parent to parent library. visit parenttoparent.org.nz or phone 0508 236 236 to request the book from the library.

parent to parent • christmas 2014

photo: attitudelive.com 9

community

Investigations by glenn lambert-vickers

Gray Ruffell has been a featured guest speaker at four of our Second Generation workshops over the past 12 months, and was a guest speaker at the 2014 Parent to Parent National Conference.

Gray, who has cerebral palsy, is also a marriage celebrant. He talks to us about his life philosophies and what drives his work with Community Investigations.

to offer their community be it socially, spiritually, or economically, Grays says. “Everyone is connected and so no one can be truly independent as we all are interconnected. Therefore it is much more Gray credits his parents as being a major influence important to interact than learn to be independent.” growing up through their attitude to their children Gray terms this philosophy Immediate Readiness, and towards the wider world. making use of what everyone has to offer right now Gray and his siblings were taught that the world is instead of waiting until they reach a theoretical bigger than their sphere “we’d watch the news and level of ableness or arbitrary standard. after a big story Dad would ask us how we would Gray set up the “Community Investigations” handle the issue if we were the people involved. presentation after attending presentations in This made us think of the wider world and to look Toronto in 2010 and 2011. “The presentations at human behaviour.” were fantastic experiences Every person has something so I wanted to share what I’d Gray’s social consciousness to offer their community be it learned with the community.” was furthered through

socially, spiritually, attending protests with The presentations build on or economically his family, especially antiGray’s personal philosophy apartheid marches.

His of immediate readiness and parents allowed Gray room to try things and challenges participants to look at how barriers offered support to learn how to do things himself, deprive the community of what all members can allowing him to be self-driven in his pursuits. immediately offer.

After Gray’s role with the Human Rights Commission was disbanded he was looking for a new direction. “I was looking for an activity that would further my identity beyond my disability and make a difference in the community.”

Gray initially presented to corporate audiences then branched out to present as part of the Second Generation workshops.

Gray enjoys working alongside Parent to Parent as “They really get my message and it was a Gray remembered a challenge his father had given particular thrill to do my presentation for the him after Gray became a born again Christian as a national conference in October. I really admire the teenager. “Dad asked me what action I was going work the organisation does and the difference it to take to do the Lord’s work.” Gray decided that makes in people’s lives.” becoming a marriage celebrant was a great way of rising to this challenge, as well as forging a new identity and serving the community. gray offers his ‘community investigations’ Gray has strong views on conformity and what he workshop nationwide on request, and also terms the talkback radio syndrome – not fitting works as a marriage celebrant. if you would people into boxes but recognising them for the like to contact gray visit his website www. person that they are. Every person has something push2themax.webs.com

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parent to parent • christmas 2014

photo: andrew baillie

parent to parent • christmas 2014

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events in 2015 jan 23 2015 sibling leader training forest lake camp and conference centre otaki Future leaders aged 17+ of the SibSupport programme are welcome to apply for this weekend programme. feb 13 2015 sibcamp waikato totara springs matamata

mar 13 2015 sibcamp whanganui/manawatu camp raukawa kakatahi A weekend camp for siblings aged 8 - 18 who have a brother or sister with a disability. mar 20 2015 sibcamp auckland peter snell youth village gulf harbour A weekend camp for siblings aged 8 - 18 who have a brother or sister with a disability.

A weekend camp for siblings aged 8 - 18 who have a brother or sister with a disability. feb 7 and mar 7 2015 sams presents ‘negotiating what i want’ houston house hamilton Learn negotiation and communication skills to navigate the new system for your family member, and get the support you need.

parent to parent’s events are provided at no cost to families. visit parenttoparent.org.nz to view all upcoming events and how you can register, or phone 0508 236 236

meri kirihimete Merry Christmas from Parent to Parent

photo: alfie linn