READER REPORT:

'Who says I need a cure?'

SIMON BUCKINGHAM
Last updated 08:00 24/05/2013
buckingham
NOT SORRY: Simon Buckingham has Asperger's Syndrome, ADHD and dyslexia.

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OPINION: I have Asperger's Syndrome, ADHD and dyslexia. Though these neurodiversity issues do not define who I am, they certainly help. They have led to some very negative and some very positive events in my life, and I am very different from most people because of them.

Firstly, the term "disability" is so misleading. I am not less abled than many of my colleagues, I am simply differently abled. I certainly am enabled, though many groups who purport to represent me want me disenabled as disabled (time for a grin here!).

For people with issues like mine, "Neurodiversity" does the job nicely. That is what we are - neurologically diverse. I agree that issues such as low functioning autism can be very disabling. However, for many of us, it is no way a disability. If you wish for an idea of how enabling it can be, the story of Temple Grandin highlights that. She really is one of my heroes in life.

Now we come to the areas of alleged support in New Zealand. I am often told that I do not have any of these issues as I seem so normal and I have done well. I am also often then told what it means to me and what I need as someone on the Autistic Spectrum (AS). Usually people listen and learn, but way too many think that they know what we need, and proceed to tell us in full detail, as if we are wayward children who are not putting enough effort in to get better.

At this point, it is worth sidetracking. What is it with society and cures? Who says that I am broken and need a cure? Have I asked to be fixed by society's definition of what a fix is? Do I want to become blandly neurotypical (NT) and part of the crowd? I am not saying that all NT people are bland, but within the AS community, many of us really feel for NT people, as they miss out on some of the most incredible experiences possible. Autistic Spectrum for many of us is a clear sensory awareness. Bright light, excess noise, texture and touch, smell – these can all cause a sensory overload.

A couple of nights ago I found myself in Hamilton near the Outback Bar. I was in a bright pool of light, surrounded by people shouting and pushing, and I was close to melting down. A meltdown is like a computer that crashes. Things get so overwhelming that we simply shut down and need a dark, quiet space to reset. However, that is the rarer downside. I love fresh, sweet strawberries. Biting into a fresh strawberry causes a sensory overload, so that I just lose myself in the taste and texture - the opposite of a meltdown and something I would never want to give up. Meltdowns are never fun, but they are rare, and with warning and expectation, but the environment can be dealt with so that we cope. Who would want to lose a sensation that is so fulfilling and overwhelming for the sake of being perceived as "normal"?

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We are fed up with people telling us what we need, and people wanting to make us all better like a broken-down car. We want neither.

We want to speak for ourselves.

People who tell us what we need have good motivations. They care, and they consider themselves knowledgeable. But you do not know until you live it,  so you cannot tell us what we need based upon your perceptions of what the issues are.

There is a new AS organisation Altogether Autism that speaks for us as it listens to us, and it's about time. Finally, we are getting people who take us seriously. 

The problem with many groups is that they sit there complaining about inequality and unfairness in society, and do one of two things: They either get passionate and it becomes a one-issue fixation that they devote their lives to, or apathy sets in, and the whole cause dies a death. Frankly, around the issue of disability awareness and inclusion, apathy has set in along with a lack of coordination. We are given lip service and some level of vague support, but nothing else. The Office for Disability Issues exists, but the real work is done by people like IHC, CCS, Deaf Foundation etc. This needs to change.

If I come over as angry, it is because I am. I am angry that I am articulate and bright, yet others speak for me as if I have no voice. I am angry because Parliament does not take us seriously, though in Labour, that is changing fast, for which I thank my friends there. This is also changing even faster with the Green Party, thanks to Mojo Mathers. The National perspective seems to be that we are either totally brain dead morons, or we are simply not trying hard enough. 

We first need a proper ministry that is separate from health. Many disability issues are around support and advocacy. Using the argument that disability is linked to health is the same as saying that disability should be linked to justice, as most of the issues are resolved through advocacy. This does not work, and this is why we need a Disability Ministry with our own minister who has a recognised disability. Such a ministry should be there for disabled people everywhere in New Zealand, and should cross party lines. It should be made up of working groups that are elected by those with disabilities so that each type of disability can be fairly represented. All bills before Parliament should be examined for disability friendliness and advice given on amendments that can support such bills.

There are roughly as many Maori as disabled people in New Zealand. Maori are Tangata Whenua, they have their own political party, legislation in the form of the Treaty of Waitangi, Minister of Maori Affairs, and their unique needs permeate our culture, as they should do. What do disabled people have? An office which disseminates information. We also have section 21(1)(h) of the Human Rights Act. Hurray for us! We need a ministry, we need recognition, and we need to be considered when laws are made. We also need the Disabilities Act to be written and passed, so that we can be on a par with countries such as the USA (Americans with Disabilities Act), the UK, Canada and every other democratic country in the world. This starts today. This starts here. This starts not with me, but with your and me.

The cure is not a cure, as we do not necessarily want a cure. The way forward is awareness, inclusion, representation and understanding. These do not cost much, but make us so much richer as a country!

I am sorry if my anger offends you. I am sorry if my "disability" offends you. I am sorry if you see my children as undisciplined when they are having an AS meltdown, and this offends you. I will never apologise to you for my existence.

Disability Awareness – we don't even have a logo!


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