I have always been somewhat suspicious of simulations of disability, no matter what the context. How easy is it really to replicate someone’s experience? I use the analogy of labour and childbirth. While I might wish that long and uncomfortable experience of mine on a few males of my acquaintance, I defy modern physical science and psychology to do so. Without the psychological makeup of whatever kind, the preceding experience and the relevant anatomical makeup the simulation would be meaningless.

It goes without question that no one these days would suggest an attempt to simulate belonging to another race as a valid or ethical activity.

While simulation exercises may claim to give insight into the experience of impairment and disability, the so called insight can be positive or negative, depending on how the recipient processes the experience. They could end up believing that the utter helplessness or disempowerment they may feel in such an unfamiliar situation is the everyday experience of all disabled people, which would be counterproductive, and false.

Disabled people do not experience disability in this way. Even if the onset is sudden there is usually some way of learning to cope and adapt before being thrown into a newly unfamiliar world. Disabled people in my experience are very creative and adaptable.

It is one experience, that’s all it is. Disabled people are as different as everyone else, and each disabled person will experience their life in a different way, as non-disabled people do.

Disability simulation is not a game either. It often is in simulation exercises which is trivialising and rather insulting. While living with disability has its fun side, it is generally not a game.

Finally, and most importantly – What’s wrong with listening to our voices as disabled people? Our voices are valid and credible, and yes they will be different and reflect different experiences. But they will tell it like it is, from our perspective.

If non-disabled people want to make a difference to the lives of disabled people in a disabling world they should hear those voices and act on what they learn from disabled people themselves, rather than trying to appropriate our experience and reflect it through a non-disabled world view.

Simulating disability is like simulating labour and childbirth, impossible. Get over it.

Bookmark to:

It is interesting to hear Judge Peter Boshier from the Family Court calling for a radical rethink of the way we deal with domestic violence in New Zealand. He cites cases of suicide because of the lack of support for victims. He also cites the lack of accountability of the perpetrators through programmes never completed.

Nowhere is the need for action more acute than in the disability community where reporting is low, and penalties for murder lighter than for murder of non-disabled people. I know of at least once case of suicide caused by bullying, and more attempts.

Domestic violence has a different meaning in the disability context. The nuances include the usual domestic and family violence which includes murder. It includes bullying in the workplace and in schools at all levels which is nonetheless violence if not domestic violence. All forms, including domestic violence, are experienced by disabled women and men.

Violence also occurs in institutions large and small. This is complicated as the perpetrators are sometimes in paid employment with service providers. If violence comes from other residents there are often few choices or alternatives for either party in their living arrangements or who they live with. But in either case it is the victim’s home. They have nowhere else to live or to escape to. Violence prevention services are beginning to take notice but their focus is quite limited and inadequate in the disability context.

As White Ribbon Day approaches I am struggling with this as I reflect on the unnecessary suffering many disabled people experience at the hands of others in a variety of situations. We have all got stories to tell, but to tell them is a frightening prospect. Many have been deeply buried for a long time and bringing them into the light of public scrutiny may seem like opening old wounds, It can also feel like inviting more pain from those who already think they have he right to intrude in disabled people’s lives in ways they would never consider appropriate for non-disabled people.
Victims who experience this include children and the most physically and psychologically vulnerable and fragile people in our communities.

This “ownership” of disabled people and their issues by others results in a fundamental and significant difference between violence experienced by disabled and non disabled people. It must be acknowledged and understood by anyone who wants to work in this area.

The Disability Clothesline therefore is a project whose time has come. It provides a medium for disabled people to safely tell their stories and perhaps find some healing by decorating tee shirts with their stories in whatever way they want. Supporters and those fortunate enough not to have a story to tell can sign a supporters’ sheet. The tee shirts and the sheet are hung on the clothesline for all to see, to provide education and promote action.

The project wants everyone to know that:

• Violence and abuse against disabled people is not OK
• It is OK to talk about it and share stories
• Violence towards and abuse of disabled people is a serious problem
• Action can be taken to prevent and detect it
• Everyone can do something about it
• As an issue it is just as important as other forms of violence
• Disability violence and abuse is part of the white ribbon campaign

We are hanging out our dirty washing in public. You can too. Nothing about us without us!

Bookmark to:

Our younger daughter is about to set off on her great OE in the footsteps of her sister.  I am a real wuss and cry each time one of them leaves home to go flatting, never mind leaving the country! I do admit to not missing the mess in the bathroom, the long hair in the shower plughole and the fussy eating. But they are very minor things in the scheme of things

I am happy to see her spread her wings and to pursue that right of passage for young Kiwis, I don’t know what it will be like to have both our daughters offshore and I dread it. Thank heavens for email, Facebook and skype. When I did my OE it was a aerogramme once a week and an occasional postcard if you were lucky. And you NEVER phoned home unless it was a life or death situation or you had completely run out of money which amounted to the same thing. But it will be hard not being able to hang out with and hug one of them at least.

Because I am thinking about them a lot more even than usual at present I have been reflecting on parenting, and for me that means reflecting on being a disabled parent. How fortunate I have been to have my girls. Unlike many disabled mothers I have had a supportive husband and family, and lovely plunket nurses. No-one ever questioned my right to be a mother, and I have never been in a position so precarious that the powers that be thought it necessary to take my children away from me simply because of my impairment and/or because I could not pay for the support I needed.

All of these things happen to disabled women everywhere. Sadly New Zealand has little support for disabled mothers beyond the services available for all women. They are not always the most supportive for disabled parents.

But our girls have been my best and most loyal supporters, even when they were little. They have never been ashamed of my impairment in front of their friends, (apart from the usual teenage stage of not wanting to be seen with their parents,) They have always accepted without question or negative comment my disabled friends, and even in the worst of teenage tantrums never showed resentment about the things I haven’t been able to do with or for them as they have grown up.

When they were little the dreaded “h” word “handicapped” was the equivalent of the dreaded “f” word, not to be uttered under any circumstances. They have even been known to rebuke their teachers for using it.

I have tried not to burden them with extra cares because of my impairment and was furious when a woman bus driver, after seeing my ‘blind’ bus pass said to one of them “now you look after your Mummy” She was only six! I wanted to say “I am the mother she is the child. I look after her!” but decided she wouldn’t get it.

So, my dear godwits fly away. Enjoy your freedom. Have fun and learn about the world but come back home before too long.

Bookmark to:

Around 2.30 pm on Stuff home page.

Govt hired PI to watch rugby on TV
A Government ministry hired a private detective to watch World Cup rugby final matches on television to see if advertising was run in the programme, a court has heard.

‘Hideous’ abuse exposed as child killer jailed
The mother of a murdered South Auckland infant wailed as the “hideousness” of their baby’s killer was exposed at the High Court in Auckland this morning.
Mother’s anguish after daughter killed
White Ribbon – in defiance of violence

Teen lay on the road after death drive
A teenage driver tried to get himself run over as a woman lay dying under the van that he flipped on the Pahiatua Track, a court heard.

Bondage dungeon owner sentenced
A Christchurch man who cut scar patterns into teenage girls in a purpose-built suburban bondage dungeon has been sentenced to nine months home detention.

Editors’ Picks
- Most Viewed
- Disgraced swimmer pleads guilty to bashing
- Election of Obama leads to more hate crimes
- Violent fighting outside High Court
- Arrest over Rotorua road rage shooting
- Blackadder returns for Christmas special
- Front-facing buggies may stunt babies’ brains
- Kiwi seeks compo over alleged abuse by Aussie priest

Blackadder seems to be the only light relief, apart from the rugby story. It is patently obvious why we so desperately need White Ribbon Day and Its not OK campaigns. Today is white ribbon day.

Bookmark to:

It is always a privilege to be able to hear disabled people share their stories. Last week I heard young disabled Samoan women take, for some of them, their first steps towards empowerment. It was sometimes sad and always moving but we managed to have a few laughs together as well.

As I said in my last blog the stories are similar the world over, I can identify with the pain and marginalisation expressed in each personal story. I also said in my last blog the differences are usually local and cultural angles, and of degree.

These young women told of being cared for by their families, but not being allowed out on their own, and being denied opportunities, such as going to school or having a job and being able to contribute to their families in the ways they wanted. Some cried as they told of painful instances of being cruelly treated by others in their communities.

Happily not all stories were sad. One young woman said she was not ashamed of being disabled, and that she had been able to achieve success in her life, and we celebrated that with her.

They all had dreams, the same dreams you would expect many young women to have. They wanted to be able to work, to party, to have boyfriends and ultimately have a family of their own. One expressed a longing to go to school.
I have just returned from Samoa, where I attended two disability conferences, the first a women’s forum. Never having visited before, I found Samoa to be laid back, hot and very clean and tidy. I don’t think I saw a scrap of rubbish anywhere, and the beautiful gardens were lush and colourful. Coming in from the airport when I got home I thought Wellington looked messy by comparison.

One meeting was held in one of the beautiful open fales, which allowed the air to circulate and a fairly comfortable temperature, while the other was held in a rather inadequately air-conditioned room.

Physical access in Samoa is minimal, as there are few footpaths and most buildings especially the churches I saw had lots of steps. There is still much to do also in terms of education, and support services. Sadly disabled people seem to be the last in line when it comes to inclusion in mainstream development aid, but I am pleased to see that NZAID has a good reputation and is funding small practical grassroots projects to help disabled people’s organisations.

Despite the, heat, the long hours of work, the usual tummy troubles, and almost being caught up in a near riot between warring schools, (over rugby) it was a great trip. We were there to help build capacity in Pacific disability organisations. We met some stunning people, and I hope we were of use to them.

Bookmark to:

March 8th is International Women’s Day.

It was originally International Working Women’s Day, first celebrated in 1909, but has been widened to celebrate many of women’s political, social and economic achievements over the years.

In NZ it usually results in rather smug lists of significant dates and women at the top, PMs, Governors-General, the occasional CEO, Chief Justice and the like. Sometimes we see groundbreaking women scientists or educators mentioned. Then the world goes on its merry way, conveniently forgetting that equal pay for work of equal value has yet to be achieved, there are still few directors on boards, senior managers in tertiary institutions and so on and women are still the main targets of high levels of domestic violence.

Disabled women are rarely if ever mentioned. They are still in workshops being paid third world rates, struggling to acquire a good education, to bring up their children, forge a career and make ends meet. They are even more subject to domestic and related violence

I am really tired of feeling embarrassed attending international gatherings where projects to improve the lot of disabled women are underway in poorer countries than NZ. The plight of disabled women internationally has been recognised in the Disability Rights Convention. Yet here our issues are subsumed by general disability or general women’s issues. I guess we will have to start the ball rolling ourselves, as women have always done.

Before I am accused of being a whinger and moaner let me bring disabled women into the list of those we celebrate on International Women’s Day.

Who are our heroines, both living and dead? There are many and these are just a few I can think of and in no particular order. They include: Anne Hawker, next World President of Rehabilitation International,
The late Dame Anne Ballin, disability pioneer
Vi Hepburn, marine engineer,
Victoria Manning, Deaf human rights activist
Trish Harris, poet
Wendi Wicks, pest about town,
Alexia Pickering, accessibility pioneer,
Ruth Jones, disability strategist,
Karen Butterworth, poet
Mary O’Hagan, mental health consumer activist and former Commissioner,
Judy Small, blind activist and public servant,
Alison Riseborough, accessible transport activist and public servant,
Linda Beck, researcher, and lawyer
Verona Moynihan, tireless community worker,
Val Smith, former social welfare commissioner and then some, Marion Wellington, tireless community worker
Josie Khoury, Video presenter,
Minnie Baragwanath, media star and then some
The late June Opie, author and disability pioneer
Pam Cook, former National Education Advocate and mentor
Marilyn Baikie, disability activist and past DPA president
Grace Wheeler, blind activist and mentor
Vicki Terrel, disability activist within the churches
Bronwyn Hayward, dancer

and all the others, too many to name, all of you, disabled women, celebrate, this is your day too!

Bookmark to: