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Portrayal and perception of disability
milo
Member Posts: 165 Pioneering
I have a guilty little secret, I watch the Jeremy Kyle show. There I've said it and it feels good to be honest. All jokes aside, I watched an episode recently entitled something like "don't stare at my child, they're inspirational". As you may have guessed, the premise was parents of children with disabilities talking about the conditions and how the public perceived them. Now don't get me wrong, these were wonderful caring families dealing with all manner of issues and I'm the first to say that educating the public is absolutely the right thing to do.
What I do take exception to is the title of the episode and the concept that someone with any disability is either to be pitied or be an inspiration. I find inspiration in all kinds of situations and know people, both able bodied and disabled who inspire me. The idea however, that someone is inspirational because of disability leaves me cold. Why should I as a wheelchair user with CP be held in anymore regard than any "normal" (how I hate THAT word) person struggling to make ends meet and raise a family.
Equality is one thing but this tendency to inspiration port smacks of a society that still thinks in terms of "how brave you are to live with a disability". Err no I'm not, I've always been this way, I don't know any other way to live. The only way I want to be considered an inspiration is for my daughters to be inspired to live their lives, their way and to make the most of their limitless potential.
OK, rant over. Time to make coffee before Jeremy's back on tv...
What I do take exception to is the title of the episode and the concept that someone with any disability is either to be pitied or be an inspiration. I find inspiration in all kinds of situations and know people, both able bodied and disabled who inspire me. The idea however, that someone is inspirational because of disability leaves me cold. Why should I as a wheelchair user with CP be held in anymore regard than any "normal" (how I hate THAT word) person struggling to make ends meet and raise a family.
Equality is one thing but this tendency to inspiration port smacks of a society that still thinks in terms of "how brave you are to live with a disability". Err no I'm not, I've always been this way, I don't know any other way to live. The only way I want to be considered an inspiration is for my daughters to be inspired to live their lives, their way and to make the most of their limitless potential.
OK, rant over. Time to make coffee before Jeremy's back on tv...
Replies
I personally think this is a very interesting point of view. First off, we all have little guilty pleasures. Mine for example is watching trash TV like Most Haunted and Ghost Adventures despite the fact its most likely faked
I relation to being a 'inspiration' I take a different view. If I can inspire someone to do something better of give something for someone to aspire to, I can only think that is a good thing. Of course, I'm not on ITV parading myself about.
I have recently been engaged in internships with law firms in Leeds and I would be lying if I didn't 'sell' my disability. Not as a negative thing of course, but demonstrating all the additional barriers that I have had to overcome to get to where I am and highlighting the future barriers that I will have to overcome in the future. I feel this helps me demonstrate a drive and determination which sets me apart from the other candidates who are 'normal' (or 'non-disabled' or 'able-bodied').
My bugbear with this type of thing is that it blurs disability into one kind of blob grouping everyone together. Not everyone has CP, not everyone who uses a wheelchair has an intellectual disability (which some people seem to assume) and not every disabled person uses a wheelchair.
So in short, call me inspirational if you want, if I inspire you: great, but remember that as a person in a wheelchair my brain still functions correctly until I tell you otherwise.
Right that's my rant over,
George
Don't get me wrong, I have no problem with being an inspiration for anyone I would just rather that it was for something other than soley having been born with CP. The main issue I have with shows like the one mentioned above is that I am always left with a nagging feeling that the guests are paraded for entertainment rather than educational reasons. Maybe it is just me but I can't help but feel that it is vaguely reminiscent of the Victorian circus sideshow or paying a penny to see the patients at Bedlam.
However I agree that the Jeremy Kyle show exploits vulnerable members of our society whether disabled or not. I have to say I cannot watch as I feel it probably does more harm than good to the families and individuals concerned in the long run. Having said that, these parents of disabled children have chosen to go on TV and that is their right. They are going on TV as individuals and not representing the parents of all children with disabilities. Interesting title though. I think it is the parents who are inspirational and not so much the children, who are just being themselves!
On a good day I might go so far as to say that I feel inspirational. On other days I just want the ground to swallow me up. My daughter keeps me and my husband grounded. She is only 9 but laughs with me and sometimes has to dry my tears. We certainly don't live a boring life. The only reason I have found the time to write this is that I have a bad back and my husband has taken the kids out for the day. Every cloud has a silver lining....
Thanks for your responses, this topic continues to be very interesting.
I just wanted to know that your thoughts are on things like the Paralympics? I remember 2012 as a year that changed many people's perceptions about disability and what disabled people can do. However, I feel it created an expectation of some disabled people (perhaps one that is unrealistic), that they should all be super active and doing all these amazing things.
Titles for programmes more recently 'superhumans', 'the unbreakables' ect, all seem to imply some kind of above average quality which is very interesting. I mean, TV seems to like showing off the 'inspirational' and 'above average' disabled people while perhaps neglecting the 'general' disabled population. Is this something you agree with?
It's an interesting question you ask @Geo08 about the Paralympics. I believe awareness was raised in a positive way about disability and the ability of the amazing athletes who participated in the games. I am not physically disabled myself but was - and still am - in awe of the incredible achievements of any athletes disabled or not, even more so if they made it to the Olympics. The rigorous training schedules any athlete has to follow to remain at the top of their game is something no regular person could do in my opinion. So I suppose they are special people in that very few make it to that level. Do you agree?
I don't usually have the chance to watch much TV so I can't really comment on the other programmes you mentioned but it sounds as though they make for watchable telly and the programme makers need viewers! In some ways they may be accused of making freak shows if they focused too much on those with say learning disabilities. I am sometimes wistful when I see actors with Downs syndrome playing roles in films and soaps as I know that this is something my son is very unlikely to do. However I never say never. I look ahead at what he will do in life rather than what he won't but I also have to be realistic! In our house the small steps are celebrated as much as the big ones:) In real life the general public don't get to be on TV unless they put themselves forward to be on games shows or reality TV series. I for one would never be seen dead on either but everyone is different. Folk like you and I maybe prefer putting forward our views on forums such as these. I'm not really one for being in the spotlight. Maybe you are? If so then all i can say is 'go for it George!'
Regards
I think there is an understandable tendency for TV to dwell on the idea of the exceptional rather than the mundane. That's fine but it tends to skew the perception of what disability is and what it entails for the individual.
I'd like to see more education in schools to give a realistic picture of what disability is. I know it would be impossible to discuss every type of issue but at least it may help end the awkwardness many seem to have around disability.
I agree with all you say @milo. Thought it might interest you to know that I was recently having a chat with my daughter about disability all because of a book she was reading. She is an avid Jacqueline Wilson fan and was reading one of her latest novels entitled 'Katy'who has an accident and ends up in a wheelchair as she damages her spine. Interestingly this was a rewrite of a book called What Katy Did. I read this when I was a child in the 1970s (still have the book as it happens!)
Amazon description is as follows:
What Katy Did is an 1872 children's book written by Sarah Chauncey Woolsey under her pen name Susan Coolidge. It follows the adventures of a twelve-year-old American girl, Katy Carr, and her family who live in the fictional lakeside Ohio town of Burnet in the 1860s.
In the original version it's all 'happy ever after' as Katy learns to walk again....
What I love about the new Jacqueline Wilson version is that it provides a much more realistic version of disability. Katy (who was a strong character to start with) goes through all the emotions of anger and self-pity and yet she gradually comes to accept that she will never walk again. At the end of the book comes the realisation that life can still be good and that she can live it to the full despite having a useless pair of legs. This book is no doubt being read by little girls across the UK so is in itself providing an education about attitudes to disability.
If anyone on the forum knows of a similar book that may appeal to boys it would be good to hear about it.
I have recently taken on the care of a little girl with CP who had never been told that this was a life long condition, she fully expected to outgrow it by the time she's 8, she's cutting it fine there! so I had that conversation with her and the recent para olympic ad of 'yes I can' did inspire her. she didn't realise that other people have disabilities like she does, she didn't realise she could do anything she puts her mind and body to, even if she needs some additional support to do it. she has lived her life up to now being told she cant do stuff becoz she's 'ill', shes 'fragile', etc. she's come from a very difficult background anyway and with a very confused sense of who she is and who she could be, and while she doesn't have any aspirations to be an athelete she IS inspired by the atheltes to try to do things that previously she thought (had been told) she couldn't do. so she now climbs stairs by walking up them (was carried or crawled previously), she walks for up to a kilometre with a walking frame after being pushed in a pushchair previously, she uses a knife and fork instead of fingers, goes to the toilet by herself, cleans her own teeth, dresses herself, all things she'd been told she wasn't able to do before.
i'm now working on the attitude of her sibling who has grown up with her and also heard, but from her own more typically developing self's point of view, the same story and who is still trying to reinforce the message of dependency to her older sibling and keep her as dependant as she can. that may well take longer to deal with!!
I get the point of not wanting people with disabilities to just be pitied or be seen as inspirational, I have a son with a learning disability so I feel that frustration too, but I like the idea of the 'yes I can' adults and children inspiring my small charge to understand that yes, SHE can too, even if, for her, this just means she can now learn to reach her own potential, whatever that may be and wherever it may take her.
Thank you for taking the time to respond to our discussion, I think what you have posted is extremely interesting and perhaps acts as evidence of what many call the 'social model of disability' (people are disabled by society and its perceptions more than their illness).
I suppose the moral of the story is: 'Yes you can'*
*with a suitable amount of hard, work with the right support and dedication.
I remember telling the careers lady at my high school that I wanted to be a lawyer. Her face was priceless! I remember her suggesting I might want to consider 'alternate' career paths such as 'retail'. We'll see who's laughing in a couple of years when I qualify as a lawyer
MS I should pay their rent
Good to see this thread continuing to generate interest. My son has Downs Syndrome (DS) and over the years I have experienced a huge variety of reactions to his obvious disability.
An elderly lady once came up to us in a pub while we were having lunch (he was 2 years old and in a high chair) and beaming at us, said "Oh bless him. One like him used to do our local paper round". She beamed again and walked off leaving us feeling unsure as to how to react! One part of me wanted to run after her and shout "He is not a breed of dog you know. He is our son and he has as much right to eat his lunch in a pub as you do without being patronised and insulted!" The other part of me (which thankfully won) realised that this lady was trying to be kind and share some positive information about what she felt the future might hold for our son. The older generation did not used to see people with disabilities in the community as has now become the norm. So I forgave her and didn't say a word. Just smiled. I have ever since then tried to remember that most people out there are well-meaning but they just don't have the right words and mess up.
We see our son as an education and we are older parents who do not embarrass easily thank goodness as he is non verbal and has regular huge frustration related meltdowns in public. I laugh and cry a lot (thats just me) but this is my life and I have to say at the moment i am in a good place and I love it.
I have never met anyone of you on this forum in person. There is a sadness in me on my son's behalf as you are all able to express your frustrations and vent your feelings on here yet this is something he will never be able to do. I am his voice and his champion. Just hope I'm saying what he would want me to say....
PS BTW he recently got his 200m certificate in swimming and his teacher says that when he is 18 (he is almost 12) she will give him a paid job teaching the younger ones water confidence skills as he shows such promise. Never met anyone with as much faith in my son or who talked about him using such normal terms ☺
And I 'get' the how much should I say to someone thing too. my sons intellectual disability is obvious to everyone, but he has other challenges too, mostly around toileting due to a congenital bowel condition, but no one wants to know about that and to be honest it is the medical problems that I have needed most support with over the years but which has been most lacking. who wants to talk about poo once their kids are out of nappies, except my son was still in nappies at 11 years old and I still needed that support. even now that he has had, hopefully his last, surgery, he still has accidents but people assume he is fine becoz after all he's had the surgery now hasn't he?! hey ho. gone way off topic now though!
Old people are very funny! I was on the bus back to uni after having attended a job interview and an old women looked at me with a wide smile and asked 'Have you just come home from work?'. Its less what she said, but the way she said it. As if to say, it's great that somebody has employed you (despite being very high up in my class and having a huge wealth of experience).
I think others have hit the nail on the head, people mean well but really don't quite get it.
People kind of look at me and I know what they are going to say...."You've got a lot on your plate!" They then don't know what to say so rather than telling the truth (especially at work) I try to keep conversation light. If I really need to talk I've one or two really close friends I can offload onto. Otherwise I'm in danger of talking about my own life all the time and that would be really boring.Unlike [email protected] I don't have much else to talk about. That's not entirely true as I have a lovely family and we are close (but I always need to ask them to look after my son, interestingly, yet they will often offer to have my daughter for a few hours!) If I have a funny story to tell I will mention it (like the time when my 11 year old son had a temper tantrum in the pub standing at the bar on holiday recently because he wanted coca cola but he'd already had a pint so I said no more. My daughter and I both realised at the same time that his shorts had fallen down and were round his ankles taking the nappy with them. Everyone had gone quiet and they were all either staring at the scene or trying to avert their eyes. My daughter and i just got the giggles and couldnt stop. My son stopped screaming at this point, diverted by the laughter and let me sort his trousers out. You couldn't make it up. Life is so funny. Moments earlier i had been in tears on the bar staff as i thought I'd lost him. They were so long bringing his ice cream dessert that he'd decided to go get it himself....think they were relieved when we finally left....
Ive digressed (again) Other people have their own problems and they don't need to hear my troubles. Hope I'm making sense. It's 2.50 am and I need to go back to sleep! Got the dreaded DLA form to finish tomorrow. Wish me luck I'm only on page 22. 18 pages to go. Wish I could learn to be more concise! Good night.