Tuesday, 10 October 2017

Disability: To some it identifies what's wrong in the world, to others it represents what's wrong with themselves.

In the summer of 2017 I hosted an event for the Business Disability Forum in London. Below is the significantly modified speech I made there. It's a thought piece really, me trying to work something out. It got people talking and I'd love to hear what you think. 

Hello, my name is Simon Minty, I am your host this evening. If you don’t know me, I’ve been an associate to the Business Disability Forum for twenty years. 

Asda supermarket sign with three symbols of a man, woman and wheelchair user with the words Not every disability is visible and Accessible Toilet
Asda toilet sign - disability is very broad these days but
have those identifying as so, kept pace?
It’s great that you are here and great that you do the job you do. I suspect some of you came to this disability or diversity role by accident, or maybe it was on purpose as it looked interesting? Maybe some of you are directly affected so have a personal interest. Dare I suggest, maybe one or two of you are after an award from the Queen! I know most of us do this work because we want to see change. Working with the Forum, such change is about improving how organisations operate in the workplace and how they interact with their disabled customers. 

After several years in banking, I became professionally involved in disability equality. Luckily for me, the changes needed were pretty clear plus there was new equality legislation to help. Skilled, knowledgable and confident people, (many of whom had visible impairments and identified as disabled) advised on how things could improve. If you were around in the early noughties, you had legally enforceable rights and were part of the conversation and informed the plan.

It wasn't all rosey. Then as now, a lot of disabled people (legally at least) prefer to keep quiet, they're embarrassed and don't want to be treated differently. The law didn't even come in to it. More significantly, they didn't see themselves the same as those who used a wheelchair or a guide dog. They were something separate and different. 

A round street sign with a red edge, inside it has multiple stick people all the same. Underneath the sign is a notice saying May contain hidden disabilities
Many people have conditions that are a disability
under the law but the condition is not visible.
In the last few years, there has been an increased openness about non-visible conditions, be it mental health, neurological or long term health conditions. That's great! But many affected people don’t speak so they don't get the assistance that could make their life easier or them more effective. They remain fearful of the word 'disability' and use a lot of mental energy trying to avoid it. So it makes me wonder, does anything unite the visibly disabled and those with something invisibleit?  

It's hard to give a straight answer. I think there is but it's complex and nuanced. It might be a perception of the self, a feeling, noticing you might be treated differently. Or, you behave differently to fit in. It's knowing you think about something that no one else does (except for those with exactly the same thing who get it instinctively). I think the fear of a loss of independence is part of it. 

Why am I asking what do we have in common? Does it matter?

A man sits underneath a white horse shaped animal. He is half way through painting black stripes on it.
Is it a horse or a zebra?
As we focus more on non-visible disabilities, we don’t have an agreed unifying model across all disabilities. Plus ca change! That's not unique and other strands of equality don't all agree on everything. The differences might be greater than the commonality but there is commonality. If the plan for those who can, is to hide it, will that just re-enforce the stigma? How do we reduce the shame for those who actually need a little help? They don't have wear a t-shirt but surely in 2017 they should be able to speak for themselves.

In the past twenty years, for some the word 'disability' helped identify barriers. Now some reject it, it's not about them. In the 90s, the word 'handicapped' was replaced by 'disability'. We may move on to a new word but is the word is the main issue? To some it identifies what's wrong in the world, to others it represents what's wrong with themselves. Can Harry Potter save us here? In the books, characters say 'He Who Must Not Be Named' as they were scared. (Spoiler alert) Harry Potter was one of the few who did say the name 'Voldermort' and Harry was the one who defeated him. I think it's a state of mind more than a word. I worry we may be setting ourselves adrift in to individual units. We must allow for our individuality, but I think finding, celebrating a commonality is desirable too.     
A photo of Simon, who is short statured, talking to someone. Simon is in a brown suit and shirt and smiling.
Simon Minty, a disabled person
and many other things.

I hope amongst the many challenges facing us in this field of work, we continue with one of the aims of the Business Disability Forum, to allow people to be themselves at work or out living their lives, to reduce the stigma of disability, but not to run away from it. 

Business Disability Forum is unique, we’re unique, let’s not be nervous, let’s be proud.