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6527212 July 13, 2009

"Societally" Disabled: An Aberration Story

... I now see Don’t You Forget About Me by Simple Minds as a sort of anthem.

Have you ever considered what it might be like to rely on others so much that you're prohibited from having your own home in the traditional sense? Aberration Nation has welcomed many guests who have shared uplifting stories of survival and hope; but we've not yet met anyone like Kev. If you think you have challenges, wait until you hear what courageous Kev has to share. This intelligent, personable forty-something-year-old man lives in a home for the disabled. Before that, he was confined to his parents living room. Look around now and count your blessings. Kev does ... and he often shares what he's added up on Facebook.

Despite its popularity, quite a few folks criticize Facebook, saying it's a poor avenue for communication ("get off your butt" or "just pick up the phone") and that it's a self-centered past time. Well, for my guest today, it's a fantastic way to communicate; sorry naysayers, he can't get off his butt. And for him (and many others) it's not self-centered, it's therapeutic and out-of-the-box wonderful.

Yes, I met Kev on Facebook.

He has more Facebook friends than anyone I've come across! Perhaps the most aggressive internet marketers have as many. Yet, Kev isn't selling anything. He's simply offering friendship to thousands of people like me. His daily posts oscillate between things like "another bloody day" and "life is beautiful." When he has a "bloody day," his Facebook friends pop out of the woodwork (or cyber space) to encourage him. And in return, he encourages them. That's what I call beautiful.

It's obvious that many of Kev's Facebook friends are inspired by his ability to communicate with honesty and courage. While we should all strive to be positive about our lives, regardless of what ails us, it's also important to express our moments of despair. And your outlet may not be available to the next person; so what if it is Facebook? Who cares? It seems to have provided Kev with a link to the world that he and other "societally" disabled people often need.

This is Kev's story.

You describe yourself as “societally” disabled. Can you explain what that means, and how you are disabled?

"Societally Disabled" is basically a phrase I coined following a chat with a friend just before Christmas last year. It speaks to barriers society erects around us.

How did you come to be disabled and how did you cope early on?

I was born with Spina Bifida and Hydrocephalus on 27 October 1967. For, I confess, most of my childhood and adolescent years, I had a chip on each shoulder. I resented the fact that I couldn't do what others could do, such as go out with friends and go out on school trips to name two examples that readily spring to mind.

How has your attitude evolved over the years and what were some of the contributing factors?

Over the years my attitude has evolved. The best example of this is the move I had to make from my family home in September 2001 (the day before 9/11). Over time, even though I'm "societally diisabled, I've had to learn to be more independent and "plough my own furrow."

You live in a home for disabled individuals. What is everyday life like there? What do you like and dislike about it?

I have lived at The Dan Y Bryn Leonard Cheshire Disability home in Cardiff (UK) since August 2002. Life here is very similar to riding a roller coaster. There are both good days and bad. Two good things about my relocation were (1) my quality of life has improved markedly over time, in sharp comparison to my life prior to my move, whereby I was practically marooned in my parents living room, and (2) I along with two of my neighbors starred in the original series of Creature Discomforts. This was a collaboration between LCD & Aardman Animations (the creators, most notably, of Wallace & Gromit). The buzz phrase of the campaign aimed at the UK community was "change the way you see disability." This resulted in my seeing myself as very much of a disabled activist. Conversely, a downside is (and I don't mean to be offensive when I say this) but my neighbors here have a collection of conditions, which can make life very stressful from time to time. You just have to "grit your teeth."

Many people have difficulty imagining what it’s like to live a “societally” disabled life. How has being disabled molded you into who you are today? At this point in your life, are you happy with how you’re spending your time, and with the relationships you have?

That is a little difficult to answer. I guess that living alone (outside my family home) has helped me mature. I serve as the Deputy Chair of the Homes Residents Committee, and I used to serve as a Regional Service User Representative. However--and this may be perceived as wrong of me--but I have longed for the chance to work and get paid for it. Having said that, I was paid for my Creature Discomforts work. This, furthermore, has resulted in two appearances on BBC Radio Wales and BBC TV Wales (my local and national BBC stations). Nowadays, as a result of not being paid to do what I've done, I'm not doing quite so much. I still spend some time as a campaigner. However, I now spend a lot of time on Facebook. As well as this--and making a lot of good friends on Facebook--I also found Stacey, a lady from League City, Texas. She is, undoubtedly, the love of my life.

Despite the positive attitude you have today, I’m sure there have been many low points. Can you share some of those with us and help us understand how you were able to move forward amidst the struggle?

Low points? One that readily springs to mind, and that has pretty much plagued me, is that I suffer from depression. This stems from an experience that occurred shortly after my fifteenth birthday in 1982. I was watching a film in school, and I proceeded to have the most ENORMOUS headache. I was rushed to the hospital where I was placed on a life support machine in an intensive care unit for as long as I could without being rendered a vegetable. I have, for this whole length of subsequent time, battled against this demon. I can still guarantee that no two days are the same. I am moving forward though, thanks to finding love with Stacey.

What are the things in life from which you derive great joy? What are your pet peeves?

There is one thing I can pick out as a great joy, that, undoubtedly, is Stacey. As for pet peeves, one issue that really gets my blood boiling is lack of respect, in all forms, that are shown toward those of us who are "societally" disabled.

Some people who live perfectly “normal” lives fail to realize the simple blessing of good health. They continue to feel dissatisfied or become bitter that they don’t have “this or that.” What would you say to those folks?

Basically, I would answer this question by telling these people, YOU DON'T KNOW JUST HOW LUCKY YOU ARE.

What would you say are the three top misconceptions about folks who are “societally” disabled?

Well, in my book, we're seen as being unable to speak up for ourselves. Additionally, we're seen to be not very intelligent. (What about Professor Stephen Hawking?). Also, I feel that some, not necessarily all, people are ignorant of us. They feel that we are not that bothered, and they don't want to bother with us. To argue that point, I now see Don’t You Forget About Me by Simple Minds as a sort of anthem.

How can we best help people in your situation? What do you need or want from us? How can we, in big or small ways, add positives to your life?

Put briefly, the best way I can think of answering this question is to say, don’t ignore us, and give us the full equality, that is rightfully ours. Give us a level playing field and the same rights as everybody else.

If you could say anything to the world and to those who have crossed your path over the years in both negative and positive ways, what would that be?

I suppose, to the people who would, or have spoken negatively, I would take a leaf out of the book of Brian, The Bull Terrier, and just say Watch Me. Which incidentally, is being seen by the UK disabled community as every bit as iconic as Martin Luther Kings' I Have a Dream speech.

To those who have looked on me in a positive light, I would like to simply say thank you for your loyal support. It is MUCH APPRECIATED.

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