Beat Disability-By Embracing It

Equity and Inclusivity
Sabeena Jalal
"To love. To be loved. To never forget your own insignificance. To never get used to the unspeakable violence and the vulgar disparity of life around you. To seek joy in the saddest places. To pursue beautyto its lair. To never simplify what is complicated or complicate what is simple. To respect strength, never power. Above all, to watch. To try and understand. To never look away. And never, never, to forget."- Arundhati Roy

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2/7/10

I'm Debbie, I've suffered from CFS and Fibromyalgia for five years now and it has got to the stage where I almost constantly need a wheelchair and even going out for a little while in the wheelchair ruins the rest of the day for me and I just sleep.

Article By Debbie :

debbiedeboo@googlemail.com

I'm Debbie, I've suffered from CFS and Fibromyalgia for five years now and it has got to the stage where I almost constantly need a wheelchair and even going out for a little while in the wheelchair ruins the rest of the day for me and I just sleep.
Anyone who has this terrible debilitating illness will totally relate to my story. I guess the issue is that other people don't. CFS is still misunderstood and as we look well and often make an effort (which we pay for later) when guests are around then we are not really regarded as ill.
I was a fun loving, party attending, social events organiser professional. I was a teacher with many years experience teaching Religion and Philosophy and had many friends and a great social life. Then I got ill. Then I lost my job. Then I lost my friends. Sounds familiar? That seems to be a common story for people who suddenly find themselves with a disability or debilitating illness. It's very difficult to adjust to not being able to walk much anymore or do the things you used to be able to do. I'm still the same intelligent, vibrant person but I find I can't remember things, i suddenly can't spell, I can't read books (I have a library room with many hundreds of books, I love reading, it has been a devastating loss), I mix words up, I can't follow conversations. I prided myself on my achievements and intelligence. I have excellent qualifications and won a scholarship to university now my head hurts when I try to think.
I've been told I'm boring now and I've lost my sense of humour. Someone looked me up on Facebook the other day, a friend I'd lost touch with before my illness. After a week he deleted me as a friend saying I wasn't fun anymore... great, kick someone when they're down....I feel bad because of the people around me and what they have to go through. My husband married an intelligent fun loving girl now I never go out and cry a lot... he has to do all the housework and phone hospitals etc on my behalf.I have tried to be optimistic that I will get better but it is hard when I just get worse and worse but I am not a person who just lies down and gives up (although suicidal thoughts have been there at times). I guess being ill makes you think about life in a different way and as I was always doing something in my previous live it was difficult not doing things in this life so I took up different more manageable activities. I got interested in complementary therapies and I am now a Reiki Master and I tried all sorts of arts and crafts, soap making, jewellery making, candle making, painting etc.
It was when I started using an elbow crutch for support on the times I tried to walk that I had an idea. I'm a colourful person, I love clothes, shoes, bags, beautiful things. My wheelchair is covered in diamante. The crutch I had was grey.... that couldn't be! So I accessorised my crutch, it looked beautiful. Then I thought I would have a crutch to suit various outfits then Glam Sticks was born! Glam Sticks are fab and fabulous crutches. Why do disability aids have to be grey and boring? I want to look fab! My Glam Stick lets me do that :) I have had so many comments since I have started using them that I decided to start a little business making them to order. This has given me something to live for and also a way to cheer other people up. It may even be a way for me to make a living in a manageable way as at the moment I can't manage a conventional job.
Anyway, this story hasn't got an ending yet, happy or otherwise but at least at the moment I want to see how the story progresses which is progress indeed xxxx
www.glamsticks.co.uk

 

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Filed under  Fibromyalgia   Real discussions   UK   Wheel Chair  
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2/1/10

Discussion about Attitude towards people with brain injury :"... But you look so good..."

A discussion which took place on the discussion board of our Face Group,"Beat Disability".

Laura Brydges
Prior to my brain injury, I rarely had people commenting on my appearance. I was a plain Jane, no make-up, nothing spectacular. Generally seen as very intelligent and energetic. But since my injury I don't know how many times I've heard: "But you look so good." And it is a comment that I find hard to respond to -- given how crappy I feel most of the time.

I think that when people say: "But you look so good," they really mean: "But you look so normal" Now, that's a different issue. And that is the problem with hidden disabilities. Perhaps they are expecting me to drool, or limp, or slur my words? But, these aren't hidden problems are they? They make a person's disability visible, and thus more real.

This is why social awareness of hidden disabilities is so important. My problems don't seem real to anyone. You can't tell that I have problems until it is too late and the problems express themselves.

I can understand why people don't know how to respond. Some are generally uncomfortable with people with problems, some afraid of doing something that will make my problems worse. Others might be scared that I might start asking favours of them, while others just don't know what to say. And all of these reasons are good ones, as far as I'm concerned.

But, just because they are good reasons, doesn't mean we have to ignore the problem at hand. Hidden disabilities are real; they are part of our world and society needs to know how to deal with hidden disabilities.

So, here are my suggestions for those who are at a loss: Please do not comment on my appearance. It minimizes my situation. Instead, say you are sorry and that you hope that life is good to me. Or say: "But you look so normal." That is honest, and opens the door for honest discussion.

That is all anyone can ask, isn't it?

Please visit the Hidden Disability page on Facebook and join the efforts to have a Hidden Disability Symbol adopted internationally. Join as a fan, and get all your friends and their friends and colleagues to do the same.

Morgan Bell
I also have a brain injury, there area of my brain with the most damage is the portion of the right hemisphere that deals with motor control, my higher functions are fine. I am in a wheelchair, my left arm is paralysed, my speech is a lot worse than slurred, and I drool a fair bit, but my memory, cognition and language is good. I notice that strangers generally talk down to me as if I'm a child, ask my carers things they could ask me (I can say yes or no comprehensibly), or act as if I have no valid opinion on anything. I honesty believe most people care, and wish to help a fellow human being (as long as it isn't too much effort). However, the brain is so misunderstood that a person with a brain injury is a visible enigma, a lot of people in modern society evaluate all things by sight, and the brain injury victim is a highly visible representation of an invisible mystery to them. I think many people feel ashamed that they have no problems with disability, and they whinge about relatively small things: traffic, a parking ticket, a five minute wait at Maccas, etc. Laura, I hope that others' conversations with you improve, commenting on someone's appearance, disability or not, is not really nice, unless it is "You're looking well today".

Laura Brydges
Morgan, your response has touched me. Thank you. I am truly sorry for your injury. It is my higher executive functions that conk out on me if I do too much, or am surrounded by too much input. Otherwise everything is relatively intact for me. I am one of the lucky ones.

I agree with and really appreciate your comments, and yes, guilt may be a big factor in how people communicate with me. I also think that, while the core foundational issues surrounding disability, communication, community support and social awarness are the same for all people living with disability, the more I interact with those suffering both visible and hidden disabilities, the more I believe that the day-to-day social and public issues differ greatly. While people assume those living with visible disabilities are less than what they are, the world is so overwhelming to people like me, where our senses are toxic to us, that people assume we can cope with more than we actually can. Overexpectations and underexpectations......bot h rooted in -- exactly as you have described it -- mystery.

I have been having a debate with myself over this -- just how far do I go promoting my Hidden Disability Symbol as an international symbol and communication tool for people living with hidden disabilities? On one hand, it is just that, a communication tool, used voluntarily to make my life easier. But on the other hand, learnings from the disability rights movements also tell us that labels can make things worse instead of better. But are those the issues of the visibly disabled, and less relevant to those with hidden disabilities like mine. I don't have the answers. I just know my own experiences, and am choosing what will help me out.

I would llove to hear your thoughts. Would you consider going to my Hidden Disability page, and giving me your reaction?

Morgan Bell wroteon October 20, 2009
Hi Laura,

As bad as my injury may seem, I have been blessed with understanding friends, supportive family, and patient carers. As different as visible and hidden disabilities are, both require patience, strength and trust to beat each passing moment. When I was younger, a friend told me about his sister, who had been disabled from birth, and he was adamant that she wasn't defined by abilities she lacked compared to the average person. Instead, she had courage in abundance to get through each day smiling and enduring that few people have mustered their entire lives. He insisted she had an "alternate ability", qualities of personality to survive each day far beyond that which a person possessing all the ordinary abilities she lacked possessed. Remembering that encouraged me when I got sick, and continues to help me now.

I'd like to see your Hidden Disability page, how do I get there? The symbol in your profile photo would certainly be a way of making hidden disabilities visible. There is such a large variety of disabilities in the community that disabled people can feel isolated even with other disabled people.

Laura Brydges
Thanks Morgan. My page is called Hidden Disability. I'm not sure I can post a link without being blocked here, so I will do two posts. One with the link and one without the link (this one). If the link doesn't work, to to the top right corner of the Facebook page and search for the two words as is: Hidden Disability. You should the blue, white and black checkered body -- that is my symbol.

I would love to hear your honest reactions, critical and complimentary. How else can I improve on what I am trying to do here.

I was right the first post got blocked because of the link, sorry. I will go to your wall, and see if I can post the link there.

 


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Filed under  Dialogue   Real discussions   attitude towards disabled  
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1/30/10

Attitude towards the wheel chair bound

 A discussion which haapened on the face book page : http://www.facebook.com/home.php?#/group.php?gid=5776371763&ref=ts

Farah Siddiqui
Hello all.........something that I am starting to realise is the difference in the way that disabled people seem to be perceived here in the UK (west in general) and Pakistan.

In the UK disabled people are fairly well incorporated into mainstream society (though there is always room for improvement). There are facilities allowing them to use public transport, attend shopping malls etc, and are provided with financial aid and the like. This allows them to get on with daily living. As a result smiling happy faces eliminates the' pity factor'. And ultimately, pity is (in my opinion at least) a fairly redundant, non-productive emotion.

However, correct me if I am wrong, but it appears that disabled people in Pakistan are perceived in a totally different manner. Disabled people seem to be hidden away somewhat (i am not referring to those who are poverty stricken and hence make a living from it). Lack of public resources means that the disabled rely haevily on those closest to them. Depression creeps up, and pity kicks in.............

Ultimately, what matters in all this, is how do our perceptions of the disabled, affect the disabled? Your views please!

Farheen Effandi-Chaudari
I agree .... even at Uni we had a lot of disabled students and our university had some of the best facilities for disabled students...this is in the UK
No one saw these people as being different in anyway...they moved around, went out and did all the things everyone else did.

However in Uni in Pak i dont recall seeing even one person with a minor disability...

Giving disabled people the power to be independent is very very important, no one likes depending on someone else for anything and that includes the disabled as well...we need to make it easier for them to have as normal a life as possibl

Very true.
Accessibility would be the key. A ramp would cost Pak rupees 5000. If the archetects and lawyers decide to address this problem and make it a point to add ramps along with stairs.... the issue would be addressed.
Kamran Sadiq
Indeed we treat them with "pity". This should change. This needs a huge attitudinal change from within the society. We need to create shools and job opportunities for the disabled.
Morgan Bell
Hi everyone,

Here in Australia, the cultural attitude is similar to Britain's, increasingly resteraunts, cinems, public transport, schools and shops are making them accessible to those in wheelchairs, but as Kamran said, a lot of people feel pity. I try to take it upon myself to prove that even though I have a disability, that doesn't make me useless, it is a gift, not a burden. Every now and then you find someone who tries to exploit your limitations to their advantage, but they are rare.

Morgan Bell
People definaety feel sorry for people in a wheelchair, because, no matter what country they reside in, disability means a lack of freedom that able-bodied people enjoy.Many years ago, a friend whose sister had a disability was telling me what she was like (she died a few years before, unfortunately) and in the course of the conversation he did not use the word "disability", instead he said "alternate ability". Now, with my own physical disability, I know what he meant. Disabled people get through life as wel\ with less tangible ability than able-bodied people. This requires more invisible qualities than most "normal" people possess or need in their existence. Because a wheelchair is a highly visible challenge to overcome, people feel feel sorry for those in wheelchairs, more than they would pity someone with a learning diability.

In Australia, I think the most pity I get from carers, family and the general public is because I can't join in most sports, and am not attractive to the opposite sex (I had that difficulty before I was disabled). I think pity or encouragement, 2 different reactions, comes from the same thought: all humans want to think of themselves as moral, so they think one of these reactions will make that person feel better.

Another thing, as disability isn't a common occurrance in most individual's experience, they might not know what a disabiled person's life is like. Almost everyone fears the unkown.
Filed under  Dialogue   Disability globally   Real discussions   attitude towards disabled  
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