Parent to Parent Magazine - Christmas 2014

parent to parent • christmas 2014 1

parentto Parent

MAGAZINE • CHRISTMAS 2014

inspiring hope

reimagining disabilityingrid jones new phd research looks at learning disability pride

kylee black inspires and supports others one step at a time

community investigationsgray ruffell investigates independence vs

interconnectedness

parent to parent • christmas 20142

Chief ExecutiveANNE 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 WilkinsonChief Executive, Parent to Parent New Zealand

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

PO Box 234 Waikato Mail Centre Hamilton 3240

[email protected]

0508 236 236 +64 7 853 8491

parenttoparent.org.nz

facebook.com/parent2parentnz

twitter.com/parent2parentnz

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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.

Mission StatementEmpowering families and whanau of people with disabilities through support and information


inspiring hope one step at a time

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.

reimagining disability pride

Ingrid Jones’ PhD research led her to investigate disability pride. She is currently working on her thesis ‘Reimagining disability: Toward learning disability pride.

united nations’ kiwi candidate

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

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.10

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parentto Parent

MAGAZINE • CHRISTMAS 2014

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.


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.

Different lenses for looking at people with a disability have evolved from medicalisation to normalisation through the social model and currently to human rights frameworks. Evolving lenses have led to major changes in the lives of people with a disability, such as deinstitutionalisation but further changes are needed to enable people with a disability to be fully included in the community. Ingrid hopes to push our views about disability a step further to celebration “as the theologian Nancy Eiseland said the way we imagine disability and disabled people must shift in order for real social change to occur.”

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.

Ingrid wants people with a disability to “feel great about who they are, as they are, as disabled people.” For families she hopes that “the rest of the world will see just how wonderful your loved one is, as you do. Your loved one doesn’t need to be fixed or learn to be ‘normal’.”

Ingrid hopes to be a link between academia and

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 – people who have lived experience. Glen Terry, an expert because he has Down syndrome, states

“[Ingrid] is always asking me for some advice.”

Alex Johnsen also has Down syndrome and has been involved in Ingrid’s research. Alex said “I think this it is awesome because you know about disability pride and what it means to you. Ingrid’s research is to help

other people to have their right to be proud, and to be part of a group that helps you unite together.”

Two important concepts which inform Ingrid’s research are ableism and pride. Ableism is a set 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 argues that society has not accepted the proud voices of disabled people yet because ableism is still an assumption made by most people.

Ingrid challenges the negativity around disability by reminding us that everyone experiences disability at some stage in their life “how useful is it to think about something that will happen to

reimagining

Disability PrideIngrid 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.

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.

by nicolina newcombe


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 [email protected].

from left: alex johnsen, ingrid jones and glen terry


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.

Following an injury which triggered the CRPS illness Kylee was bed bound for six months and home bound for three and a half years. During this time Kylee wanted to find a way to keep contributing to the world around her.

Thinking about how meaningful getting messages from other people had been for her, Kylee started leaving messages for fellow children and young adults on the internet. Kylee decided to send out homemade encouragement books and packages as well. This idea led Kylee to set up an 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.

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 push those.”

Kylee has recently been speaking at a number of engagements to share the experience and

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 what she can’t do. Kylee’s personal motto is “one step at a time and soon enough when you look back those steps turn into miles.”

For people who have a chronic illness there are still limitations. Kylee explains what it is like to be in her shoes using the Spoon Theory. A spoon

represents a unit of energy that it costs a person with chronic illness to do everyday tasks, like getting dressed. People who have a chronic illness only

have a set number of spoons each day. When the spoons run out the person loses the ability to do anything other than rest.

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.

In mid-November Kylee marked the six years since her illness began by participating in the six kilometre Around the Bridges event. Kylee completed her goal of finishing alongside friends

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.

inspiring hopeOne step at a time


Take opportunity when you can and it doesn’t matter how big or small it is, run with it”,


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.”

photo: natalie jellyman


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.

Robert calls the nomination a privilege and is looking forward to meeting new people through the committee. It is really important for people with a disability to represent themselves Robert believes, although he said that sometimes he finds it hard. “I know our world and I have grown up with people all my life, I have talked to a lot of people.” Robert feels that even if he is elected there is still a way to go to get full representation and points out that people who have speech impairment are still being “wilfully left behind.”

The Committee may need to make some accommodations for Robert if he represents New Zealand “it would be great if the committee could focus on communicating in plain language.” A meeting assistant is important for Robert to have equal participation.

Robert’s parents had a choice when he was born of either bringing him up without any support or putting him in an institution. Robert thinks that society has “come a long way but there is still a lot more to do. People with a disability are still shoved into boxes. There needs to be a lot more choices for families and disabled people.”

A biography has recently been published about Robert called Becoming a Person, written by John McRae. The book chronicles Robert’s journey

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 feels are important for families. Supported decision making, for example, is very important for families with children that find it hard to speak up. Education is a basic human right that is not being met in some cases and Robert advocates for the

right of all children to be educated in a way that meets their needs. “To me it is no ifs or buts or maybes, education is one of the most important things in life.”

The committee made some comments about issues that affect families:

• New Zealand Public Health and Disability Amendment Act (also known as the Carers Bill) - the committee recommends that all family carers are paid the same and have the same entitlements as other carers.

• The committee expressed concern at the barriers some children with disabilities encounter accessing public health and education services. This is likely to be particularly true for Maori children with disabilities.

• It was recognised that New Zealand is working towards better recognition for people with a disability before the law. The committee added that immediate steps should be taken to replace substituted decision making with supported decision making. This means that

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.

united nation’sKiwi Candidate

Society has come a long way, but there is still a lot more to

do. People with a disability are still shoved into boxes. There needs to be a lot more choices

for families and disabled people.



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.

photo: attitudelive.com


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.

Gray credits his parents as being a major influence growing up through their attitude to their children and towards the wider world.

Gray and his siblings were taught that the world is bigger than their sphere “we’d watch the news and after a big story Dad would ask us how we would handle the issue if we were the people involved. This made us think of the wider world and to look at human behaviour.”

Gray’s social consciousness was furthered through attending protests with his family, especially anti-apartheid marches. His parents allowed Gray room to try things and offered support to learn how to do things himself, allowing him to be self-driven in his pursuits.

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 remembered a challenge his father had given him after Gray became a born again Christian as a teenager. “Dad asked me what action I was going to take to do the Lord’s work.” Gray decided that 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 has strong views on conformity and what he terms the talkback radio syndrome – not fitting people into boxes but recognising them for the person that they are. Every person has something

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 important to interact than learn to be independent.”

Gray terms this philosophy Immediate Readiness, making use of what everyone has to offer right now instead of waiting until they reach a theoretical level of ableness or arbitrary standard.

Gray set up the “Community Investigations” presentation after attending presentations in Toronto in 2010 and 2011. “The presentations

were fantastic experiences so I wanted to share what I’d learned with the community.”

The presentations build on Gray’s personal philosophy of immediate readiness and

challenges participants to look at how barriers deprive the community of what all members can immediately offer.

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 particular thrill to do my presentation for the national conference in October. I really admire the work the organisation does and the difference it makes in people’s lives.”

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.

community Investigations

Every person has something to offer their community be it

socially, spiritually, or economically

by glenn lambert-vickers

gray offers his ‘community investigations’ workshop nationwide on request, and also works as a marriage celebrant. if you would like to contact gray visit his website www.push2themax.webs.com


photo: andrew baillie

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

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.

mar 13 2015 sibcamp whanganui/manawatu camp raukawa kakatahi


mar 20 2015 sibcamp auckland peter snell youth village gulf harbour


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

events in 2015

meri kirihimeteMerry Christmas from Parent to Parent

photo: alfie linn

Documents

Parent to Parent Magazine - Christmas 2014