Over the last year or so I have been playing a part in the charity Scope's campaign to End The Awkward, which aims to ease society's discomfort when interacting with disabled people. Whether we like it or not, the majority of the public do feel awkward when meeting disabled people and are not sure how to act or what to do. It was this that drove me to get involved, and in the period since I have written blogs and appeared in various videos, including this one where I light heartedly explain one of my many "awkward moments".
I think it is great that Scope are trying to challenge the stereotypes around disability in a way that draws the public in and makes it enjoyable to learn. They have just released a set of comedy shorts with Channel 4 that take this to it's extreme, and trust me these films are hilarious. They are also all based on real things that actually happened to disabled people. While many disabled people support Scope, some are less sure. The Disability News Service recently ran a story highlighting a backlash against the campaign which mostly focused on worries that many disabled people are having their support cut and maybe this would be a better focus of such a public campaign. Another issues is that the End The Awkward campaign makes light of a deeper force that causes people to discriminate against disabled people.
In the DNS story Lorraine Gradwell, former chief executive of Breakthrough UK, another influential figure in the disabled people's movement, explained her worries "'End the Awkward' neatly ignores the pressing matters around disability such as social security, housing, and hate crime. Scope have got everything wrong with this campaign, treating people's attitudes to disability as if it were just a matter of good manners, when in reality it's often about blatant discrimination." On Twitter a row broke out over one facet of the campaign, which tells the public that it is fine to ask questions of disabled people, as long as they are asked "respectfully". As I write this the team behind ETA at Scope have contacted me to say they have listened to those people who were worried about this advice and have changed it. Just proves that this is a campaign that listens, so if you have a story tell them.
While I think it is possible to run this kind of lighthearted campaign and still fight for the rights of disabled people, which I know Scope does, I found myself agreeing with the worries over the concept of telling the public it's OK to ask us questions. Any disabled person will agree that one of the strange things that happen as soon as you venture out of your home is every person you meet feels they have the right to ask you every question that pops into their head. I get asked "what happened to you?", "what wrong with you?","can you have sex?" or "does your willy work?" on a regular basis, and have done since I was a child. I was even asked "what happened to you?" while out on my first date with my wife, which was really embarrassing.
My wife and I are now used to people asking about our sex life, or telling my wife she is "such a wonderful person for giving up so much" (they mean sex, if only they knew!) when we are out. I've even made a career as an inclusive service trainer from my experiences of finding myself being expected to be fine with telling the world every detail of my life as a disabled person. Yet every time I am asked some intrusive question a little part of me dies. Sure, no one asks out of malice, but do they ever think "should I ask this?" or "would I ask this is this guy wasn't disabled?" before they pry? I doubt it. This was one of the reason I got involved in the End The Awkward campaign, to tell the public NOT to feel free to ask whatever they like, so I was rather upset to find Scope was giving the opposite advice.
Imagine, would you think it is fine to go up to a gay or lesbian couple and ask "What do you two do in bed? Who does what to who?" or ask some one from an ethnic background "Where do you come from?" and when they reply "Camden" say "No, I mean come from originally, as you're not British are you?". Both of these question would have been common experiences back in the 70's and 80's yet today I bet you all cringed as you read them. They would be unthinkable, and if anyone did ask them they would be considered at wrong to have done so. So why is it OK to ask disabled people equally invasive questions? The funny thing is that I know for myself, if you talk to me I will probably answer most of your questions within a conversation anyway, apart from what I do in bed... that takes a few drinks maybe.
If you let the disabled person decide if and what they tell you with in conversation you won't offend anyone. Remember, for every disabled person like me, happy with their life and secure in their impairment, there will be some who are not yet ready to talk about their lives. By asking them questions about their disability you are causing them upset and harm, and I doubt anyone wants to do that. Sure if you think someone might need help, politely ask if you could assist them but otherwise I would avoid asking them questions about their disability, no matter how much you desperately want to know. If you do this, you really will be ending one the most awkward things about being disabled.
Later this year the End The Awkward campaign will be exploring the subject of disability and sex, so watch the sparks fly then! In the meantime, here's a film I shot for Mosaic magazine exploding the top ten myths around sex and disability... to get you in the mood!
Of course now Scope have changed the advice on the ETA website, this is a non-story.... but thanks for reading anyway.... ooops.
Video used by permission