Director, ADA inc
Ok, its not a politically correct question, but its still one I’m asked a lot. How disabled do you have to be to join a scheme, get a railcard, get a grant, be seen as a member of the club? Some people have asked it about the Sync leadership development programme – ‘how disabled do you have to be to join?’
How many different answers do you need? The social model of disability answer is clear: if you feel that you have experienced societal barriers because you are a person with an impairment – you are a disabled person. The Disability Discrimination Act definition is clear: a disabled person is ‘someone who has a physical or mental impairment, which has an effect on his or her ability to carry out normal day-to-day activities. That effect must be substantial (that is more than minor or trivial) adverse and long term (has lasted or is likely to last for longer than 12 months or for the rest of the life of the person affected). When I applied for my disabled persons railcard the definition was clear: if I used NHS hearing aid batteries, I could have a pass and one third off my rail trips.
So according to all the three definitions above, I’m a card carrying crip, a fully paid up member of the disability club (I’ve been refused access to training and to some employment because I use hearing aids; need equipment support to get up, use phones or alternatives; have the all important NHS battery book). Why then, do I sometimes feel a fraud?
If we ‘fess up, we have to acknowledge that, like all minority groups, we can be a bit catty in the disability movement. I think my discomfort with owning the label stems from two different ‘catty’ comments that I have received (I am sure there are more, but one good thing about having a hearing impairment is that I often miss things!).
When I was at college, studying Theatre of the Deaf (Reading University), an external assessor once said I was ‘not really deaf’. Now what he meant by this was that I was not profoundly deaf, didn’t have BSL as my first language, used hearing aids and my residual hearing and lip read (but I suppose his comment was shorter). He also meant I had ‘a hearing mind’ – I processed information in the same way as many hearing people, rather than like some Deaf people. I wasn’t part of Deaf culture. I was gutted. Having been rejected from the hearing world, for not fitting in, I then felt I was rejected from the deaf world too, for exactly the same reasons. Where could I fit? I found my home in the disability movement, ironically in some ways as many Deaf people don’t like the label ‘disabled’ feeling that they are a linguistic minority instead.
I found I had much in common with other disabled people – battles over assumptions and low expectations, timetabling around hospital appointments, reliance on equipment and services – things I later came to understand (through learning about the social model) were the very things that disabled me. My mother however felt I had nothing in common with ‘them’. I wasn’t in a wheelchair, my speech was understandable and I didn’t have a learning disability.
The other catty comment came from another disability arts consultant, whom I had pipped to the post for a piece of work. They simply said, ‘Well, you don’t dribble’. They meant that I was somehow an ‘acceptable face of disability’ – my access needs didn’t stop me jumping on and off trains at a moments notice, didn’t mean I had to arrange support for one to one meetings and didn’t stop me reading and digesting endless jargon filled reports and research material. This comment gutted me too, but in a different way. Most disabled people I know are uncomfortable with the idea of a ‘disability hierarchy’, but most accept that its there – untalked about and unacknowledged, but its there. Like in Orwell’s Animal Farm, all disabled people are equal, but some are more equal than others. My understanding of this had, before this comment, led to a desire to involve disabled people whom others often did not involve, for example, people with learning disabilities. I felt (and still feel) that many supposed ‘disability’ events marginalise learning disabled people rather than valuing them and including them. I had not considered that I might be perceived as ‘not disabled enough’ for the work that I do.
I’ve spoken about this to others in the field, and interestingly, many have their own stories – being told they got work ‘because you’re the pretty one’, or ‘because you’ve got the wheelchair’. What makes us feel able to criticise each other like this? Why can it not be that we got work because we are great at what we do, talented, skilled, put forward a good proposal? We roundly, and rightly, condemn non disabled people for judging us based on our impairments and then, when we feel like it, flip the tables and do it to each other.
And I think I do my work well. Evaluations on my work are good, I’m often asked to do more, I gain a significant number of the tenders and contracts I put out for. I feel respected in my field. I don’t think I’m necessarily better than anyone else – disabled or non-disabled. I think some of the work I get I would have irrespective of my own label and equally sometimes I know that being disabled myself does help – it gives me a status in my specific field, a credential, if you like. But do people employ me rather than other disabled people because, in their eyes, I’m ‘easier to manage’? I came away from much thinking on this deciding that the problem here, if there was one, was with those making the decision and not me, going for work. I can’t be responsible for the decisions or the criteria that people use in making their judgements. I can be responsible for my work, being a role model if you like and ensuring that those I work for see disabled people as competent, skilled, high quality deliverers.
One thing I did make a decision to do thought is to support other disabled people looking to work in the same field as me. If I am asked to do work and can’t, I suggest other disabled people who can. If someone wants to watch or shadow me and its possible, I say yes. If it’s a job for two people, I’ll pair up with another disabled person I know can deliver the goods or maybe someone who needs experience in that area to develop their practice.
But what do I think in my heart of hearts? What do I feel as I talk on the phone (yes, possible for some deaf people some of the time – I can do it when I don’t have tinnitus and when its someone I know who doesn’t mind repeating themselves if I don’t catch something). Do I feel I am disabled enough?
And the answer is yes. And after much thought and consideration, I can give you five simple examples that prove my ‘disability status’ to myself:
At the end of the day, self identification is still the best definition we have. Accepting yourself as a disabled person, for me, is as much about a state of mind as it is about your impairments. I see myself as a whole person, equal to others, with requirements in some areas. To meet those requirements, I need other people to take their responsibilities seriously and provide support, equipment and space. Being a disabled person and owning that label isn’t something I see as negative, because I don’t believe that there is anything in that label that says I can’t do things.
So how disabled do you have to be to join Sync? That’s up to you. You could link yourself to the Disability Discrimination Act definition: do you have a physical or mental impairment which has a negative effect on your ability to carry out normal day-to-day activities? Or to the social model definition – have you experienced societal barriers because you are a person with an impairment? You could even go by the Census definition and consider yourself to have a long term health condition rather than a disability. No matter how you define yourself, you are welcome to join us and your perspective is valued.
Just don’t ask me if you qualify for a disabled person’s railcard – that’s a very different question!