Living with a disability

A PERSON LIVING WITH A DISABILITY VIEW POINT

BY

KENNETH THOMAS


 

As I am typing this the International Day of Persons with Disabilities has just past (December 3rd), I am thinking about the life I have had as a person who is living with a disability.

 

For the first 20 minutes of life, I did not breathe, which caused my brain damage. As a result I have a disability called Cerebral palsy.  The brain damage did not affect my intelligence but did affect my muscle coordination.  I am able to walk (a little) dress myself and do lots of things that does  not require fine muscle motor movement.  I cannot control my individual fingers to do things like buttoning a shirt, putting on socks, feeding myself, and writing and/or typing using my hands, nor can I wheel a wheelchair with my hands.  To compensate for these deficiencies I have found other ways of doing things for myself such as:

  • Wearing pants with elastic waists (before rugby style pants came out in the 70’s I needed help every time I went to the toilet because I could not undo or do up my pants, but now I go by myself.  It is really hard to find these  style of pants in stores any more!)
  • Electric wash and dry toilet seats; yes you to can get these! No more need for TP. All you have to do is be able to press a button.
  •  https://www.homedepot.ca/en/home/p.c3-200-elongated-toilet-seat-in-white-with-bidet-function.1000704926.html
  • Slip on shoes, Velcro running shoes, ETC. I hate laces!
  • I have typed with my nose on a computer for almost 30 years, and before that 20 years (all through school) on an electric typewriter using a head pointer. Math was the hardest to do!
  • Wheeling my manual and track wheelchairs backwards using my feet.  I think I’m the fastest back wheeler in the world travel ling at an average speed of ten kilometers per hour. (I competed 14 years internationally all over the world with the Canadian Cerebral Past Sports Association team in wheelchair track. Competitions including at two Paralympic Games.  I still run/wheel in local 10 K road races and this past summer I have competed in five half Marathons ( 21k in 2:34 minutes)
  •  I also swim one kilometer (40 laps) in one hour on my back with the aide of a life jacket. (75 minutes)

  • I have an adult size specially designed tricycle which I ride all over.
  • Eating snacks (apples, cookies, chips etc.) off the table with my mouth, while watching football, hockey games etc.
  • I travel all over town on public low floor accessible buses now. And do a lot of other things by myself, because Edmonton is getting a lot more accessible as the years pass.
  • Taping my monthly city transit pass and a water bottle holder to the armrests of my wheelchair, so the driver can see my pass as I get on the bus and I can drink and drive (water only!)

 

Since I have not been able to find a paying job, I have done a lot of volunteer work.

I have volunteered for over 30 years now with the following organizations:

·        Cerebral Palsy Association in Alberta.- 8 years 

·        Alberta Committee of Citizens with Disabilities - 6 years

    Cerebral Palsy Sports Association (first president) 10 years

·        The City of Edmonton Disabled Adult Transportation Advisory Board – 5 years

·        The Alberta Cerebral Palsy Sports Association.- first President - 10 years

·        City of Edmonton Advisory Board on Services for Persons with Disabilities.  6 years

      Board Member and Vice-President of the Maintenance Committee - Artspace  Housing Cooperative for 2 years. I was on this Committee for 14 years and continue volunteering on many of the Co-op's other committees. I have lived in my own apartment in Artspace now since 1990  We have our own in-house supports for independent living program for the members who acquire some assistance with their personal care.

        The Accessibility Advisory Committee (formerly Advisory Board on Services for Persons with Disabilities) is a resource group reporting directly to City Council on issues, needs and services related to persons with disabilities. The committee is also a source of information and advice to City Council, City departments and citizens.

https://www.edmonton.ca/city_government/city_organization/board-members.aspx


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The main reason why I have volunteered with the above organizations was to help make our Alberta and Edmonton a more accessible/livable place for persons who have disabilities to live/play/work in. I really hope more persons with disabilities will become actively involved on boards and committees in their communities in the future to keep our needs and desires in the limelight of policy makers! 

Although there have been a lot of technical advances made that have benefited persons with disabilities, I want to mention some things that frustrate me as a person living with a disability because some technological advances have made things harder for us to use and do by ourselves without assistance of some one or thing.

Phonebook print so small you need a microscope to see the numbers (site disability, which a lot of persons have!)

 

Food and other packaging almost impossible to open without the use of an instruction manual or knife.

Push buttons on electronic devices so small that sometimes you cannot use your fingers far less mouth sticks, or in my case my nose, to press them (e.g. TV remotes, cell phones)

 

Electric locks on car doors that will not open by pulling the handle when they are locked, or elevators, hotel room doors that you have to use a key swipe card to use.  All these locks should be changed to key fobs scanner type locks, which are much easier for a person with a hand disability to use. We might not be able to get out of a place that is burning, because of these locks.

 

Living with a disability can have its difficulties but we can have a full, active, fun filled life when we are given the things we require to participate in our community.

 

 Please visit my website http://www.backwheeler.ca/

 

 

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