Portrayal and perception of disability

Hi @milo

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

Hi Milo an George. My 11 year old  son regularly gives performances to the public in the supermarket, on the street, in restaurants etc which give them a run for their money despite not even requesting one! All I can say is I feel joyful that he has as much right as anyone else to be out and about and if he  throws a wobbly then that is also his choice. He has Down Syndrome and a severe learning disability but he certainly know what he wants and doesn't want! It can be exhausting keeping up with him and dealing with his frustrations and challenging behaviours.  We have certainly seen the best in many people who have tried to help me when in the middle of one of these tantrums but also seen people just sit with their jaws hitting the floor clueless as to what to do or say. Who can blame them! He is an education to those around him and often is approached by kind people who have no experience of how to communicate with a child who is non verbal and non compliant. They have sat on the cloor with me asking how they can help. I thank God every day for being blessed with a sense of humour as I don't know how I'd manage without it.

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....

Hello again @Geo08 and @milo

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

Hi @milo and @Geo08

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. 

Hi @onyee,

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

That, @milo is kind of the message i'm trying to send to my small charge, that the CP doesn't mean she IS CP just that its a part of her and who she is but it isn't the sum of what she is, which is kind of the message she got in her family home.  she changes her mind every day, as small children are wont to do, about what she wants to be when she grows up and her ideas range from being a dustbin man, to a doctor, to a vet, to a teacher to a dog walker.  she knows no limits! she does also complain bitterly when I tell her I wont do something for her that she is perfectly capable of doing! but old habits die hard I guess!

@milo hi there, I'm new to this forum and this is the first topic I read. I just wanted to thank you for bringing this subject to light. All the time I get your an inspiration or you've done so well with your condition. It gets sickening and really annoying when people keep doing it. The worst is when it's people like your family or your friends. I have a hidden condition, autism, and it becomes a battleground in my head when deciding to tell someone that I have the condition or not. It can make or break a friendship. And the fact it's exploited on TV makes it even harder to just be accepted for who you are as a person rather than your condition. Again thank you for posting this topic. It's good to know I'm not alone in this, although it shouldn't be happening in the first place. Ive got to the point where I now just give retorts, like I said to one of my friends, you're such an inspiration, I mean you're blond and you go to university good for you. He looked at me all shocked and then launched into a rant about discrimination until he realised what I was doing to him. I'm not proud of it, I have nothing against blonds or anyone for that matter, I just wanted him to feel what I was feeling. 

@milo when I meet people I am constantly thinking that. I am always asking myself, how much do I need to know tell them,how much should I tell them. I have found when people find out that I have MS they want to steal from me. Mostly they want to steal money or medication. It's like because I have
 MS I should pay their rent

hi @Katymary321 my son (22 and also with ds) is also a swimmer.  he takes huge pride, and rightly so, in his swimmer acheivements. one thing I learnt some years ago is that while I sometimes, often back then, got sad and frustrated on his part, actually he doesn't.  I used to worry becoz he had so few friends and never ever wanted them to come home and I worried that he was getting very socially isolated, but actually he was happy like this.  he has some autistic behaviours too and compartmentalises everything.  his friends from school were great, but only at school.  his friends from swimming were great but only at swimming etc.  home was for family. if he sees me outside the home when he is with his day centre friends and carers he wont even acknowledge me, his friends do though! 
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!

@Katymary321

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.