“The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge” – Stephen Hawking
I was quite shaken by the death of Stephen Hawking which has surprised me. I knew of the man (you would have to be living under a rock not to know who he was) but I didn’t know him personally. I have read some of his books but he has never been on the top of my reading list, the closest I get to “theoretical physics” is watching The Big Bang Theory.
I do take more of an interest in basic physics these days due to the functioning impact it has on my life. As I have aged I have become increasingly aware of things like mass, motion, angles, lift and it goes on. A transfer from my wheelchair to my car involves basic concepts of physics. A height difference of one inch in my wheelchair seat to my car seat can have a major impact on the angle of propulsion I need to calculate for the transfer to be successful. A successful transfer is the difference between finding myself on my car seat or lying on the road. I try to find parking spots with the equivalent angles I’m use to.
A two degree difference on that hill I’m approaching may require a slight increase in motion speed to make it to the top. The topography of a curb-cut angle may require a seating shift to create a different angle of balance or a directional angle in approaching the curb can mean the difference of getting up the curb versus laying on the road. These are all basic physics and done without a lot of thought. I don’t sit there calculating those things, I just know from experience and do it. However these are the little things of daily life most non-disabled don’t recognize, why would they. There is always a purpose I do many of the things I do my way. The more advanced applications of physics I will leave up to Stephen Hawking.
The commonalities I share with Professor Hawking are generational and disability. He has a few years on me but we were pretty close age-wise. It wasn’t his achievement in physics, as impressive as they were, that created the affinity I feel for the man but the quiet advancements he made for disability activism. His death has stirred up a wide assortment of thoughts I have been suppressing for years.
Professor Hawking was diagnosed at a very young age with ALS (21 was very rare). He was told at the time he would never see his 25th birthday but went on to become one of the longest living survivors of that deadly disease. He surpassed that age by fifty years but he was dealing with the healthcare information of the 50’s and 60’s. Advancements happen and times change.
As a polio survivor (1953) I was told I would probably never see my 30th birthday. Well guess what, I’m still here and going strong. Not sure that’s a good thing but it is reality however there is a world of difference between the issues I faced at 30 and what I am confronted with at 67.
Stephen Hawking had the strength of character to overcome and that strength was romanticized by many. I don’t believe many people fully understand the pain and indignities he would have experience just to survive. In the world of disability dignity has many meanings. When you have spend your life being poked and prodded by members of the medical profession dignity becomes irrelevant. You use strength of character to mask that loss of dignity and medications to overcome the daily discomforts associated with a life time of the ravages on your body a disability creates. The dignity we do hold on to means playing the negative stuff down.
What people don’t hear about is the physical pain associated with what it feels like to have your ribcage slowly sagging and compressing your organs. Most people don’t understand the years of internal issues created by the continual use of catheters or the ongoing issue of aroma caused by the weeping of pressure sores due to poor circulation. A circulation that is poor due to lower muscle tone. His strength of character and those most close to him helped keep those aspects of disability out of the spotlight.
I can’t fully speak to the disability related challenges Professor Hawking had to deal with but I can do a bit of a comparison. I know how my legs are throbbing following six or seven hours sitting is a distorted fashion in my wheelchair. I shutter every time I hear the “latest” health issues associated with sitting for to long or the increase in the number of deep vein thrombosis cases.
Even going out for a stroll is emotionally challenging. The sun is out today which use to mean a chance to get out and enjoy the fresh air. My decreasing ability to “bounce back” from a fall has become a barrier to independent living. Something as simple as a stroll around the block has become challenging. Having a wheelchair approaching the end of its life span creates a basic insecurity. I’ve reached a point where I am not prepared to deal with the consequences of something like a broken axle or a punctured tire.
These are issues that would never have been a barrier ten years ago but play big on my mind now. Hearing about Hawking’s death created created a tsunami of “scenario” thoughts for me. We have both outlived expectations, he has found his peace and I have to find my solutions. There is nothing on the horizon that would lead me to believe I will be following him anytime soon.
Today may be sunny but it is creating some very dark thoughts. Social isolation does that and sitting here planning a major move doesn’t create sunny thoughts. I know I’m on my way back to Calgary and soon. I know I have some strong friendships there which will provide more opportunity for socialization. Right now the hardest part is not knowing where to have my mail forwarded and that is becoming stressful.
RIP Stephen Hawking, your work here is done…
A Poster Child's Perspective 