Thursday, February 24, 2011

Disability Participation Can Be Boring

Today we have another guest post from Carl Thompson who writes the blog Working at Perfect. I first got chatting with Carl after he commented on the Weddings and Wheelchairs blog post, agreeing that it's great to see images of people with disability doing "normal" things. This post has kept me thinking on that point... Enjoy!

Carl Thompson
 
This post is about the concept of participation, and I am writing it for February's Disability Blog Carnival, held on the 25th. In its simplest form, participation means undertaking activities, often with others. This isn't an English lesson though, so instead I want to talk about what participation means for me in the context of my disability.

This is an extremely important topic for people with disabilities, as all too often doctors, physiotherapists, occupational therapists and the media focus far more attention on what we can't participate in or do, as opposed to what we can. On the rare occasions where people with disabilities are portrayed in the media, it is almost always an inspirational story telling of someone rising to the insurmountable challenges they face, or overcoming great adversity - you know the stuff, the brave disabled doctor with six PhD’s, or the mountain climber with no arms who has scaled Everest solo.

So this is going to be a bit of a letdown, but what I participate in is pretty boring. Maybe boring is not quite the correct term, but definitely nothing out of the ordinary. I go to work, come home and sit at the computer for far too long. I also eat and drink, occasionally in places outside my own home! I have friends, they visit me and I visit them. We talk about movies and TV shows. Get drunk, play games and drink coffee.
 
Are you bored yet? I know I am, but I'm trying to prove a point. People with disabilities can be amazing, and can participate in activities which most people would think were impossible. But these utterly interesting people, like everyone else in the world, are the exception and not the rule.

Unfortunately, in addition to the pedestal that disabled people are often placed upon with regards to achieving amazing things, the opposite is also true. For instance, many people are amazed that I have a bachelor degree from University. Others are also genuinely impressed that I go to work, and shock horror, that I actually get paid for it! This is a revelation to these people, as they finally realise that I'm not a token disabled volunteer, and that I actually like money and higher education.

Why do people think this about disabled people? Is it really that amazing? What about the tens of thousands of able-bodied people who earn their degrees every year? Or the millions of Australians who work every day? What I'm saying is that many people mistakenly perceive my participation in everyday activities to be something out of the ordinary, when really, there isn't all that much people my age participate in other than going to university, drinking beer and starting work.

I'm not an inspiration - I'm not a prodigy, a miracle, or a Paralympian. I'm just a dude who rants on the Internet who happens to be disabled.
 

Thursday, February 17, 2011

Benedict Cutler Clothing Solutions


Today I'm able to post a really interesting story about two Australian entrepreneurs Ben Cutler and Zane Conroy, and their new business Benedict Cutler Clothing Solutions. It's great to see people observe a problem, in this case a lack of appropriate business and formal clothing for people who use wheelchairs, and find a creative solution that will benefit many people.

Zane Conroy and Ben Cutler
When Zane Conroy acquired a spinal cord injury in January 2010 leaving him with quadriplegia he set himself a goal, to return to work by September that year and get on with life. Just before he left the Royal Rehabilitation Centre in Ryde he met Ben Cutler who was to be one of his support workers helping him with this goal and day to day activities. 

In September when it came time for Zane to return to his office job in Sydney’s CBD he was disappointed to find that the suit he once wore with pride to his job and on formal occasions did not fit in all the wrong places and he was left feeling distressed. “I honestly felt very uncomfortable and even claustrophobic, no matter how I directed my carer to move or adjust the suit, it was choking and too loose at the same time. Not something I could see myself going to work in every day” said Zane.

“I had met Zane only recently but quickly realized he was about as strong willed as they come and so the look of disappointment on his face when his clothes were all frumpy and ill fitting moved me to make some enquires” explained Ben. 

Having looked extensively online at available options Ben quickly got in contact with his Uncle John of J.H Cutler bespoke Tailors to see what they could do to help. “Uncle John had fitted some clients who used wheelchairs before and was happy to help alter Zane’s suit so that it looked and fitted as one should”. The alterations were a great success and even incorporated hidden zippers for easy access to personal care equipment, but most importantly they fit well whilst not restricting movement and avoiding pressure areas.  After some more enquires into other clothing options, or lack of, Ben has decided, with Zane and in consultation with J. H. Cutler bespoke, to put together a clothing line consisting of not only formal wear but also casual trousers, jeans and jackets. 

Launching in April, Benedict Cutler Clothing Solutions will be offering both a personalised and online service to restore clothing and fashion options to those who happen to use wheelchairs and feel that this should not inhibit ones ability to look and feel good in what they wear both to work and in social situations. You can find out more by visiting www.benedictcutler.com.au .

Monday, February 14, 2011

I want to know what love is? I want you to show me...


Today is Valentine's Day, and Rich Fabend has written a very timely guest post about lasting love (not just chocolates and flowers!) For those who think the title of this post sounds familiar, they're from a song by Foreiger. Enjoy!

Rich Fabend

Since Valentine’s Day is Monday I will give you an example of what love is because I can’t show you. My wife Marge and I have been married 45 years.  At my son’s wedding I was asked to give a brief talk. The following quote was part of what I said: “The last 29 years have been the best of my life. Marge and I have shared laughter and tears, good times and bad, joys and sorrows; but more then that, we have shared our dreams, our inner most thoughts, our strengths, our frailties, and we have shared our love. Marge has always been there when I have needed support.  Things that happen to me when we are apart are not complete until I share them with her. Only with Marge can I truly be myself and completely relax.”

Less then 5 years later I had my accident. The accident did not just happen to me, it happened to my family but since we had an “empty nest” it was really Marge who had to shoulder the majority of the responsibilities. The readjustment was greater than we ever anticipated. It took a long time. I like to tell people that our dog realized in a few weeks what it took me years to figure out and that was that Marge was now the alpha member of the family. Many couples, unfortunately, do not survive the consequences of a readjustment of this magnitude. We were very fortunate to head into it with a strong relationship built up over 35 years. More often than not people tend to focus on me and the challenges that I have had to deal with. I think many give little thought to the tremendous responsibilities placed on the spouse. My wife epitomizes the wedding vows and lives up to Tammy Wynette’s call to “Stand By Your Man”. Marge, not only cooks and manages our home, she also oversees all my care issues, chauffeurs me everywhere I have to go and puts me to bed every night. I owe my good health and lack of complications to Marge’s supervising my care.

The hardest part of my adjustment is having to watch Marge deal with the physical tasks that have been thrust on her. Yesterday and today February 10 and 11 we received several feet of snow (check the roof of the dog house in the picture). We have a wonderful neighbor who keeps our driveway plowed and open. But there is still a lot of physical work she must do like shoveling the front walk and bringing in firewood. There are also activities she chooses to do like feeding the birds. After my accident we decided that the birds would be a wonderful source of entertainment for both of us. I have built some bird feeders and we have feeding stations all around our house. The snow from the storm is waist deep so movement off paths is extremely difficult. Both yesterday and today I had to watch Marge shovel her way across the lawn, pulling a sled full of birdfeed behind her. She had to shovel in several different places to reach all the feeders. She returned to the house tired from her struggles. Why does she do it? After all it is not necessary; the birds would survive anyway. Marge struggles to feed the birds because she loves them and because she loves me. So Foreigner that’s only one small example of what love is!

P.S. If you know Marge please don’t mention this blog to her because she doesn’t want me to write about her.