‘Do you have Cerebral Palsy?’
If you’ve had a chance to look at the About page, you’ll know that this area of the site is going to be dedicated to my own life experiences. Please don’t get me wrong, I’m not yet narcissistic enough to think myself worthy of my own section, far from it; I’m your average 21 year old male: added cynicism, sarcasm and hopeless romanticism included (free of charge). However, as many of my friends can testify, my life has a habit of leading me into quite bizarre situations. I attribute this mostly to an annoying twist of fate but sometimes, undeniably, my position as a wheelchair user contributes.
Worringly, these situations occur most frequently when I use public transport. That is to say, on the occasions the ramps are working and bus drivers don’t ignore me by failing to stop. Although I’ve heard many ‘nutter on the bus’ anecdotes, my own experiences tend to make them comparable to Sunday tea with your gran. For instance, a few years ago before I left for university, my journey home was interrupted by a large man declaring to the rest the bus that he’d ‘seen me around his area’. When it transpired he lived near Hounslow whilst I live near Twickenham – I knew I was in for a long ride. Things only got worse, soon he was confirming my position as his ‘best friend’ and explaining, quite logically, how he’d seen me ‘going around his head’. Certain I had never seen the man in my entire life, I got off four stops early and braved the cold! Other incidents since include a mother of two demanding I ‘do something’ to calm a lady with Down syndrome, distressed at her preferred seat being occupied – I could almost see her mind concluding: “it must take one to know one”. It’s a shame my disability telekinesis has never functioned correctly.
Considering this illustrious history, I was wearily unsurprised at the eventful nature of my bus journey to meet a friend for coffee last week. Things started out innocuously enough, that is until I heard a lady behind me state ‘…that’s ok, I’ll talk to this nice young man’. The sense of impending dread behind my smile was confirmed by her introduction:
Lady: ‘Do you have Cerebral Palsy’
Me: ‘Yes, do you?’
- Is this the face of Cerebral Palsy?
Let me be clear about my response; it was a result of my growing inability to stop my dry sense of humour taking over my body. I have no problem discussing my disability, I frequently joke about it with friends; it’s the only way to handle it. To my mind context and intention are the barometers between which humour and malice can be distinguished. The fact this lady had correctly analysed my condition within 2 seconds unnerved me but also proved she knew what she was talking about. Despite this, the way she interpreted two scratches on my face as a kiss before proceeding to trace it with her fingers was far from re-assuring; I only made matters worse by explaining I couldn’t keep the girls off me. Nonetheless, from there on we had a very interesting discussion, she had worked at a home for the disabled in Russia 10 years ago. Most striking were her comments about Russian and Eastern bloc attitudes to disability; the frequent public abuse, the barred windows and lack of funding for even electric wheelchairs. This got me thinking, how far have attitudes evolved (or otherwise) toward disability within those nations previously behind the iron curtain? Any thoughts or information would be greatly appreciated.
Watch this space.
Алекс – у меня в старой стране до падения железного занавеса, мы не хотели бы видеть или говорить об инвалидности. Это было не то, что мы чувствовали себя хорошо отражаются на нашей великой нации. Несмотря на репрессивный характер советской эпохи семьи остаются важными для всех нас, и мы заботятся наши родители и дети, с любовью и чувствительности. С конца 1990-х мы сделали большой прогресс в оказании помощи инвалидам интегрироваться в наше новое и прогрессивное общество. Это медленный, но если учесть, с которыми мы должны были преодолеть с 1990 года это не удивительно, что мало что изменилось.
Что интересно в вашем блоге событий, которые Вы испытываете в якобы civilsed западном мире, где ваше общество не был репрессирован, как мы были в России. В отношениях вы описали так ясно в сочетании с недавним беспорядки и грабежи на улицах многие из ваших крупных городах, я спрашиваю ваше общество на самом деле, как передовой и, как уход, как мы заставили поверить? Юрий Светлана
Hey Alex, it’s Lucy. The madness continues I see. Your reference to ‘nice young man’ is very familiar to me, well, I get ‘nice young girl’ but I’m sure it’s said in exactly the same way. One day I will say ‘who said I was nice?’ and see what happens.
I’m starting to think we need a proper campaign about the attitudes of bus drivers – maybe we could both use our blogs as a base? Let me know if you’re interestend. I’m sure our combined stubborness would be a force to be reckoned with.
Sure, although I personally haven’t found the drivers to be the main problem, more the bus ramps being faulty. We need to link our blogs – I’ll get back to you.
Hi Alex – what no new experiences since 22 August? Has TfL suddenly got itself sorted? No more weirdos on the buses, tubes and trains? All ramps working? Sounds too good to be true!
Alex
I found this site when commenting on your article in R&T. Reading your blog made me smile as my daughter deals with all you describe often. She is 13 years old, although maturer than her years. She has a form of muscular dystrophy, so mentally very able but physically not so She also has a dry sense of humour and this is certainly one of her many charms. She is unable to travel by bus alone because of the number of times the bus has either not stopped or refused to take her because of children in pushchairs parked in disabled space. I cannot take the chance that she may have to sit at bus stop for up to an hour (as she has done), and we only live in Hook near Surbiton. I get more annoyed about others perception of her than she does – she doesn’t let it get to her and is much more mature than I am! I think one of the only times she is irritated is when people feel they need to talk to her and then they feel sorry for her! Her most hated expression is “bless her”.
I look forward to hearing more about your experiences as it will certainly help me, and Lucy, learn how to handle situations to come. She is planning to train as a clinical psychologist at university – so will need lots of tips!
Anita
Hi Anita,
Firstly, sorry for not responding to this sooner! I am now writing music reviews for another website http://www.altsounds.com and so have neglected the blog slightly. This will be rectified soon!
I can totally empathise with Lucy’s experiences. I’ve lost count of how many times I’ve struggled with buses. Coincidently, I recently wrote a piece about this exact issue on another blog, run by a girl who is also called Lucy (!?): http://topicalcreativity.blogspot.com/2011/11/ramp-on-bus-goes-up-and-down.html. Lucy and I both share the same physio and she got in contact because she also plans to go to University.
It is funny that you mention pushchairs. I’ve only properly lost the plot once…after I was refused on-board because a mother couldn’t be bothered to fold the pushchair and make her child sit in a seat. This is not to say I don’t rant and rave; some of the comments by Metis literally had me shouting around the house (just ask my parents!) but I feel I’ll only get undermined if I fight with fire on these issues.
That said, a sense of humour is especially vital as a wheelchair user and it’s great that Lucy maintains this. I played wheelchair basketball from about aged 9 to 16 and some of the contrasting attitudes still stick with me: the sense of aggrievement, a them and us mentality which I found totally pointless – at odds with the goal of integration. My mum fought hard for me to get into mainstream school, a very difficult task in 1990, and it is something I’ve always been thankful for because it didn’t shelter me or curate a sense of difference. Sure, I suffered bullying when I was younger but the majority were broad minded enough only to judge me on my personality rather than the chair. As a result, the occasional idiot who made/make comments thereafter were/are spared no mercy. The biggest challenge as I have got older has been making people feel at ease with the disability and this is where the dry, sometimes self deprecating sense of humour really pays off.
However, I still get the ‘bless him’ just as Lucy gets the ‘bless her’. Thankfully, it’s normally confined to old women or air-headed girls in clubs wearing excessive make-up, sporting luminous fake tan and trying to model themselves on Katie Price. Given these characteristics, you could say my wheelchair is an effective filtering device!
Anyway, I will be posting in this section more often. If I can help you and Lucy at all feel free to contact me. I don’t know if Lucy has facebook yet but the link to my account is at the top. Moreover, my e-mail address is ataylor1790@gmail.com. I’d better e-mail this comment to you actually, since I don’t think I’ve set up the blog to notify people when a comment is made.
Thanks for all your support
Alex xx
Hi, I’m the afformentioned Lucy.
I just wanted to say that if (your) Lucy wants to get in touch with someone who is both a girl and closer to her age (16), then drop me a comment on my blog and I’ll be happy to help.
I am the afore- mentioned physio ! Great blog Alex, enjoy your written anecdotes nearly as much as the face to face ones !
Keep at it ! Jen