2009-02-06 by Maria Zedda
Many charities’ and government campaigns use slogans that focus on disabled people’s abilities. Disabled high achievers are celebrated and their experience used to inspire others and bring attention to disability discrimination.
Sometimes in my training class I use an ice-breaking exercise called ‘Guess the disability’: a list of famous people who are not usually associated with any impairment (there’s no Stevie Wonder, for example) is examined by trainees who have to guess what disability each ‘star’ has. This is to help participants explore their own perception of disability: do they feel differently about it when they find that Tom Cruise has severe dyslexia, Jodie Foster wears hearing aids, or that Sir Steve Redgrave has Type 1 Diabetes?
This exercise has been useful for me as a trainer because I often work with participants who regard disability as a dreadful and alien subject. This exercise acts as an icebreaker and helps people realise that disability is far more common than they may think. The trouble is that I do sometimes wonder if by using this exercise I am encouraging a harmful stereotype of disabled people – the idea that they are all heroes who have overcome some terrible misfortune.
The focus on ability in various campaigns is well intentioned but seems to imply that we are valuable only when we do exceptional things like run a business with a £1m turnover, or win three Olympic medals. There are disabled people who make fantastic achievements and those stories are absolutely inspirational.
However, the great majority of us are not the next Richard Branson or Tanni Gray-Thompson and the tests we face on a daily basis are less likely to grab headlines. I mean things like inaccessible buildings, negative discrimination, unprofessional services, and general lack of awareness as I experienced when a bank employee once shouted at me through his protective glass because I didn’t hear what he had said to me the first time. Then, when I told him that I wear hearing aids and the loop system didn’t work, he shrugged and said ‘sorry I don’t know how to operate that’.
There is nothing to celebrate here – no celebrity status, no inspirational stories and no glittering careers – just people getting by. Highlighting ability may be inspiring for some, but on its own it doesn’t educate enough, it doesn’t really raise awareness of disabled people’s human rights.
Instead, let’s have a campaign focusing on the barriers we face every day because as a society we can do something about them. We can provide accessible buildings, transport and facilities. We can train people and help change their attitudes. We can educate schoolteachers, university professors and care workers so they learn to empower disabled people, not do things for them. Once the daily barriers are removed then hopefully we can stop being heroes and just get on with our lives.
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I really like this blog and with the external links to the other sites. As for innaccessible buildings this is something that i face when having to go to London or other areas of the country, such as Cambridge or even local Network meeting, you press the buzzer and hope that the door opens, no you have to do this yourself, whilst tipping your wheelchair backwards to try and get over the lip of the door. This can be a potential nightmare, plus you drop everything in the meantime and hope that someone comes running – no chance.
Then you have a very complicated lift to try and understand to the point that this is touch sensitive, when i used to pressing buttons to get me to my destination, coming back down is a complete nightmare.
Accessible public transport (LONDON) don’t make me laugh it is not always working, perhaps people ought to stand up be counted and listen.
I am fortunately involved now with Disabled sport, and using my local gym (Leisure Centre) which is sort of accessible to an extent, but if you are struggling then people (able-bodied- non impaired) come to your aid.
As i know i have struggled to get some doors open and pulled muscles, which is very painful.
Yes i am coming across and having my soapbox moaning yet again, but someone has to.
If you have the opportunity to have a look on my website we have just introduced Wheelchair training for people who are not impaired to get a sense of what it is like for someone like myself who has to use one all the time when i am out and about.
Well done Maria, it's good to talk about this stuff
David Rolph 6 February 09
The difficulty is getting the balance right. On the one level there is a role for positive role models as they help to break the negative perception that is reinforced in many disabled people across a life time. I see no problem in people like Peter White being held up as an example of success. The other problem is that many of the people who are labelled as positive role models are anything but. When did we last hear Tom Cruise give any insight into the problems of having dyslexia? Whilst I don’t think our impairment should be our single point of personal definition there is a difference between incidental acknowldegement and positive identity. High achievers also become a rod for our own back. We can’t all be Stephen Hawkins, etc so we need the balance that inspires and gives us the right to fail.
David S 6 February 09
I grew up without any role models – I actually did not know anybody else who was disabled or had an impairment in all the time I was at school. I was the only person in my entire school who had a mobility problem and people just made adjustments for that. My mum demanded for my rights – this is why I am where I am. And for so many people it is their family and close friends who were their advocates who makes the difference between the disabled person life chances.
Many people struggle with their impairments and do not like being thought of as ‘disabled’ – for them this is a stigma. What is a positive role model? For me, its just another disabled person who shows me that they don’t give up, without the ‘super crip’ labeling. I love the ‘disabled and proud’ tee shirts people wear at disability events in the US.
Eleanor 6 February 09
Excellent blog. This is an area that I sometimes struggle with and where I would find myself in difficult position trying to ‘strike that balance’ mentioned before. It prompts me to read more/learn more. Thanks Maria.
Leandro Herrero 6 February 09
I was in a training, and this is the exercise they used for disability. 4 columns—each with a disability—paraplegia, downs syndrome, blind, and another (don’t remember). Then first everyone had to pick, if they had to choose a dis, which one would they choose to have. And then if you had to choose which one not to have, which one would you choose? It was very uncomfortable, especially for those of us who already had one of the “chosen options.”
Do others have suggestions on other trainings that would work better (brief, like 15 minutes)? I would like people to get over negative perceptions, and obviously this didn’t work! It wasn’t my exercise, but I told them not to do it again. They asked for suggestions, and I was a bit stuck.
Beth 6 February 09
I would strongly recommend to steer well clear of these kind of exercises because they will never make a true difference. If we sit on a wheelchair for a day, we know that eventually we will get up, won’t we?
What I usually do is this: ask your trainees to imagine what barriers people with various disabilities would encounter in reaching their services: for example steps leading to an office for a wheelchair user, lack of clear signage for a visually impaired person, and so on. Let them come up with as many barriers as possible for a good range of impairments. Then together explore how these barriers can be overcome in the same real life situation: ramps over steps, effective signage, a text display in an intercom, but most of all inclusive customer service, which stands for attention to the individual needs, no assumptions made, promptness and a genuine desire to help. This is a much more solution oriented exercise but you’ll also need to incorporate a few activities around the Social Model of disability. This will help focus on seeking solutions and working together with disabled people rather than feeling sorry for them.
I hope this helps!
Maria 6 February 09
What a terrific blog! I so agree with you. Worse than the superheroes among us though are the objects of pity, Jerry Lewis style!
It’s hard for people without disabilities, apparently, to achieve any kind of balance!
Here’s my latest blog posting at Penny for Your Thoughts. It’s about US politics, but I hope you’ll enjoy it!
Here’s the link:
Penny 7 February 09
I think the greatest danger is to be seen as an object of pity… someone who can’t do anything and must have help with everything. Oh, poor me.
I dislike the sit in a wheelchair for a day exercises because invariably the person is given one of the hospital type wheelchairs that are difficult for anyone to manage. Then after a day or a couple hours in it, the person has struggled enough with the inferior chair that their arms are sore. Then they conclude, oh those poor people who use wheelchairs, it must be so hard.If you have a decent wheelchair it’s not that hard. After you’ve been doing it for awhile, your arms don’t get sore.
I also dislike being treated like a hero because I handcycle and I mono-ski. People will say to me “That must be so difficult.” Well, no it’s not. It would be very hard for me to do it the normal way, actually. I’m an average handcyler and an average mono-skier.
I do like my role models, though. The paralympians are someone for me to look up to and someone who gives me motivation.
Isn’t that the key, though? Some people with disabilities are just bumps on a lump, some are average, some are role models and some are heroes. The goal is to be treated as the individuals that we are. What we don’t want is to be forced into a one-size-fits-all category because we are not one-size-fits-all. We are individuals.
Sandy Lahmann 8 February 09
For some with labeled disabilities, the Jerry Lewis Effect tended to hold them back by reinforcing a belief that all people with disabilities are pathetic and incapable of being of any value. That sux. In my case, I’ve lived for 52 years with a disabling systemic disease and no label, partly because the disease defies medical diagnosis and partly because it’s systemic and not confined to a single organ. For me, the Jerry Lewis Effect meant that virtually everyone believed I was either faking it or a hypochondriac because I wasn’t in a wheelchair or even bleeding. Growing up with that has a long-lasting psychological impact.
The Jerry Lewis Effect pertains not only to straights, but to PwDs as well. Too many times, I’ve heard the “How can you compare your disability to mine?” attitude. I sometimes want to respond with “If you think I’m less disabled because I don’t have a wheelchair, try giving up yours for a week.”
I’m finding that being disabled is a full time job, at least partly because of this effect. After being denied paratransit because I don’t fit the profile, I’ve had to write a twelve page appeal explaining my limitations and how they relate to ADA paratransit eligibility requirements. This process required extensive research into both the disease and the regulations. I anticipate that the appeal will be rejected and am going through the process mostly hoping to inform somebody. In other matters, people will likely challenge me in public accommdations because my service dog is not a seeing eye dog and I’m not in a wheelchair. Keeping disability benefits was a special challenge and I was denied promissed disability insurance benefits from my employer because I “looked too healthy to be sick.” I’m working on gradually educating my primary care doctor about the disease and I have to deal with the disease itself as time and energy allows.
Ironically, the disease for which I’m now being evaluated is a type of Muscular Dystrophy which might never have been diagnosed if it weren’t for awareness of the disease raised by the Muscular Dystrophy Association with support from the Jerry Lewis telethon.
Dale Roose 9 February 09
Interesting points by Dale. I use a wheelchair and people either assume that therefore I’m totally fine and never need any kind of help, or they assume I want to be pushed! In reality, it’s somewhere in between. Some days I’m totally fine and other days not. On the days I’m fine, it seems people want to give me a push, and on the days when I have bad fatigue, it seems everyone assumes I’m fine. When assuming I’m fine, then there can be struggles, like finding who in the school district can recognize that wheelchair does not equal “Beth feels great all the time.”
Back to the hero point, there’s also that—I must be a hero because I get out of bed in the morning, because I work, because I bi-ski and handcycle, because I follow an exercise routine. Wow—“you inspire me.” Ugh—sometimes I hate that comment, but occasionally, I do like it, especially post-MS exaccerbation. Like everything, it’s a mix.
Beth 11 February 09