Access by Various artists


Of value in and of itself

by Chelle Hope

‘Special Needs Kids’. I’ve always hated those words.

Yet many parents of children who have needs that would not otherwise be provided for by any of our government-run systems have become accustomed to using this language and see it as essential in the framing of their children’s needs, so that they might get access to important funding. I have sympathy for this approach, from the perspective of people trying to access limited funding for their children – but how we talk about ourselves and others in relational terms matters a great deal.

The articles and the comments that follow articles about such subjects have had me so down about the state of things for people with disabilities, including myself, that I haven’t been able to write this until now, many weeks after I was approached to write something. It’s really got to me and not for the first time.

When we talk about ‘special needs kids’ it becomes obvious when you read the comments on any article highlighting issues around government support and funding for disabled people that this framing is having a continuing detrimental effect on how some non-disabled people view disabled people. They frame the needs of disabled people against their own, which are seen as a priority.

I haven't picked up on a consensus, but there are enough people who have commented that we should sort out the needs of ‘normal’ people before we look to those with ‘special needs’ that it makes me want to cry. The language that they use tells me they see disabled people as abnormal, with everything that label suggests. It’s a useful demonstration that we must be careful with rhetoric meant to serve a particular purpose that it isn’t used against us. We all have needs. Needs are needs, they are not special.

I’m not going to link to or reference a specific article here. My gripe is not with one journalist or article, or the comments on one article for that matter. My problem is with how public discourse around disability frames us in terms of our economic worth. 

One of the things that those of us who were born with or who have acquired disabilities in childhood learn early on in life is that we are considered a burden by the public and by the state. Again, this is amplified in public discourse and particularly in the media. It’s difficult not to imagine that there are people who would prefer we die in a ditch than get access to government funded services and assistance that might improve our lives to the extent that they are liveable, which seems to me to be a minimum ‘quality of life’ standard.

I was always confident, right up until my mid 20s, that I would not be a ‘burden’ to anybody. I had earned a 1st class honours degree and I had participated in university life and worked part-time for the university in a couple of different areas. I was active in politics and I had a good social life. I felt I didn’t have any problems keeping up with my peers. The next step was getting a full-time job so that I could be a fully contributing, worthwhile, useful, taxpaying member of society. Nobody was going to refer to me as a burden! 

Well, life got in the way. 

First, in what I suspect were instances of careful and unprovable discrimination when I was applying for jobs and then when my health began to deteriorate and it became clear I was no longer a suitable candidate in the existing job market due to the unpredictability of my health.

When I had my leg amputated in 2014, it had been 10 years, from ages 24-34, since I’d had anything like a normal life and – even with improved health – with my body wrecked and a very short CV with a gaping hole in it, I found myself unemployable.

The fact is though, by the time I left school, I’d already cost the state a massive amount just in my healthcare alone, let alone in education. I have absolutely no idea what sort of figure we are talking and no real interest in knowing how much I cost the taxpayers of Aotearoa/New Zealand. Tens of thousands? Hundreds of thousands? I know the figure will be staggeringly high.

The time it took for my mother to look after my basic needs, especially as a baby and young child, was also very much higher than the time she needed to invest in my three sisters. That time was intensified greatly during health crises and post-surgical care. I have cost a lot of people a lot of time and money over my lifetime. 

My parents had to make decisions early in my life that were necessary and life-saving but they were not a given. They were far from encouraged to enable me to live any kind of life. For them though, it was a no-brainer. They fought for me and my life. They never weighed up how much I was going to cost them or the Aotearoa/New Zealand taxpayer. I was their baby and they made the best decisions for me with the information they had at the time. Every decision they have made for me throughout my lifetime since then was with my quality of life in mind. This country could learn a lot from my parents’ example.    

Don't get me wrong, I’m a big fan myself of enabling disabled people who can work to get jobs and careers. Not having something meaningful to fill my days is indescribably spirit-breaking and not being financially independent at my age is truly degrading and depressing. 

Given comments I’ve heard over my adult life, I know people think it’s a charmed life not having to work. Not having to work is quite different to not being able to work, though. There are a great many things that are barriers to people getting into and remaining in work, mine happen to be disability-related. 

One place that has been accommodating of my disabilities has been university. After a 15 year break, I’m about to begin my PhD on disability identity in NZ. I have been accepted as a doctoral candidate and by the time you read this, I will probably have started officially, though I’ve been thinking and reading about it for months now.

The chances that I’ll be able to work much, if at all, after I get my PhD I would say are minimal. I hope I’m wrong but I have to proceed in the context of it being a project of value in and of itself. I don’t have the luxury of looking too far into the future, which is completely unpredictable for me, at best.

At this point, it’s a gamble whether I’ll be able to get through the three or four years of intensive research and writing that I’ll need to invest to even get it done, but I think it’s very telling that I’m confident enough in the university environment, with its excellent support system and infrastructure, to give it a damn good go. 

In one of my favourite songs (Fantastic Voyage) off my favourite David Bowie album, Lodger – don't @ me – he sings: 

“Remember it’s true, dignity is valuable but our lives are valuable, too.” 

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