It is hard to believe that someone that is encase in a large mechanical device, can be invisible but Connor has been invisible on more than one occasion. when he was young, it used to astound me how many individuals would walk right into his chair--in malls, parks and other places--as if he did not exist, as if he were invisible.
when Connor was in high school he participated in the drama club. in fact, he won the Drama award for the highest overall mark. that not withstanding, he was never invited to a class or drama party, never asked to go on school trips and was generally excluded from most events. For all intense purposes he was invisible. Considering the size of his wheelchair and himself, to make him invisible took quite a bit of ingeniuity; but he remained invisible nonetheless. If you mentioned to his fellow students that the parties and venues that they chose were inacessible and that they were deliberately excluding Connor, they would have been mortified. so he remained invisible.
Our families, with no malice intended, all have wheelchair inaccessible homes, even though 2 were purchased after Connor's birth and diagnosis. Every year there is a great discussion in our home about Christmas and the inevitable logistic nightmare of having Connor attend the family Christmas eve dinner; no matter where it is there are problems. The biggest one being that he is invisible. No one talks to him. he and I sit together, usually at a table catching up. One year, a former girlfriend of Jarrett's was there and observed this phenomenon; being a recent graduate of psychology, she was quite fascinated! She noted that there were people all around him, yet, not one had made any effort to engage him in conversation, despite the fact that we were in a house that was less than 1000 square feet. Connor smiled, and said "that's nothing, watch this!" and at that point he yelled out "ROUGH PIRATE SEX" there was no reaction: no head turned, no conversation stopped, no shhhhhhh from the various mothers in the room; he was, for all intense purposes, invisible.
Fast forward to University. Connor is about to graduate from the Humanities and after 4 years he is still invisible. He has won the Senate medal of Honor for the highest achievement in the Humanities program, yet, the post graduate party has been planned at a venue that is inaccessible. This is not the first time in his university career that this has happened but it is certainly the most important.
What most people do not understand is that there is more to inaccessibility than a set of stairs. If the place is not set up with wheelchairs in mind, then there will not be bathroom will not be accessible, nor will it be easy enough for an electric wheelchair to manoeuvre around. Yes, he could transfer to a manual wheelchair, but this leaves him helpless and more invisible. he is then totally dependant on those around.
I have often been accused of being too dramatic, perhaps even melodramatic; however, I highly doubt that any event that involved people of different racial background would be held at a Klu Klux Klan rally. Nor would a PRIDE event occur at a Heritage party meeting. Yet, it does not enter into very many people's consciousness, that a person may not be physically able to enter a premises. the problem is not just that the building has stairs; it is also a perception of the disabled community in general. I describe it as there being two kinds of wheelchair accessible: regular wheelchair and Connor wheelchair. Most of the public think of the media model of the disabled when seeing to accessibility--the Rick Hansen chair or Artie on Glee (who ironically, is played by an able bodied actor). these people are paraplegic and a small part of the disabled community: they still have full use of their arms. Connor and many like him, do not. they therefore, have become the invisible part of our society.
Once, when giving a keynote address to a group of teachers, Connor was asked, which did he think more marginalised him: being gay or being disabled. he answered that he thought that it was being gay, since it was socially unacceptable to be openly hostile toward people in wheelchairs but there are still factions of our society, in which, derogatory remarks toward differently gendered persons are acceptable. Looking on it now, I think he may be in error, because being invisible seems so much worse.
Thursday, 31 May 2012
Sunday, 27 May 2012
“Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.” Margaret Mead
I have frequently used the above quote to keep myself and others going when times seem so insurmountable that giving up would be easier. the day that we were given Connor's diagnosis was one of those days. we had spent the morning and afternoon been poked, prodded and assessed by every speciality that the Bloorview centre could throw at us and then were place in a physicians office to wait while the "team" put together their results to let us know what the final outcome was. Connor was 15months old at the time. We had already been told at 7months of age that he had cerebral palsy, but that it was probably "diplegic" and only affected one part of his body.
as part of the assessment it was necessary for the whole family to be present. so there we were, Max (feeling very uncomfortable with the medical model) Jarrett (to say at this point that he was bored and fracticious would be an understatement) Connor, (tired, hungry and worn out from the testing) and myself utterly and absolutely exhausted in every way!
After a time, the Dr. came in. I cannot remember her full name, probably because she always had us call her Shelley, but I knew by the look on her face that we were not going to like what she had to say; I had worn that same look many times.
She started with all the medical lingo of the things that the physiotherapist, speech and occupational therapist had discovered. To be honest, I have no idea what she said; Jarrett had chosen that moment to show me something or other and Max was shifting uncomfortable. But, if I could take a picture with my mind I could tell you everything about that moment: the colour of the walls, the examination table that was there, the cars Jarrett was playing with, and how Max was holding Connor and bouncing him, sneaking hugs at the same time. Then, the Dr. said something that did catch my attention, "some children with some kinds of cerebral palsy can walk; Connor is not one of those children. it is unlikely he will ever be able to sit, walk, run, or even do much for himself since his disability was Spastic Quadriplegic Cerebral Palsy." this diagnosis essentially meant that he had the most debilitating form of the disorder at all. At that moment, Max burst into the most heart wrenching sobs I have ever heard, and at seeing his father cry, Jarrett thought that he should join in. I must say I was confused at best at what to do next. I remember the Dr. asking if she could get us anything. in my usual sarcastic way, I quipped:"Kleenex"
She asked if she could answer any questions with the caveat that she knew this was a lot to take in. It might seem strange but I asked if his disability would change how he looked. To say that Connor was a beautiful child was an understatement. His skin was porcelain and his eyes emerald green. He had a smile that dimpled and sparkled his eyes. the thought of a disability taking that away from him as well as everything else was too much to bear--so I asked. her answer was that he was a beautiful child and that would not change--but was I not concerned with the other problems we were facing, was there nothing she could answer about all that?
I straightened my spine, handed Max another tissue, held Connor that much closer and looked at her and said, " You don't know me and you don't know my son. Do not tell me what he cannot do or will not do; Let us show you what he can.
Along the journey we met many therapists and helpers. Connor did learn to sit on his own and did so until his legs were too spastic to cross. With the help of an electric wheelchair, he not only walked he ran! Many times in the opposite direction of where I wanted him to go. He played hockey, took Jujitsu, music lessons, acted in plays and ran for student council, among other things.
In school he was told not to take French or other languages because of his learning disability. he was also told in grade 9 that he would not be able to keep his A average up; he succeeded in maintaining his A average up to the end of his Bachelors degree!
Next week he graduates from Carleton University with a Honours Degree in the combined major of Humanities and Religion with a minor in English. He is graduating with highest Honors and is the winner of the Senate medal for Humanities--granted to the student with the highest level of achievement in their program. He not only can walk and run but now he flies!
So embrace the idea that you can change the world or anything else that you seek out to try. Never discount that ability. as Margret Mead said: “
as part of the assessment it was necessary for the whole family to be present. so there we were, Max (feeling very uncomfortable with the medical model) Jarrett (to say at this point that he was bored and fracticious would be an understatement) Connor, (tired, hungry and worn out from the testing) and myself utterly and absolutely exhausted in every way!
After a time, the Dr. came in. I cannot remember her full name, probably because she always had us call her Shelley, but I knew by the look on her face that we were not going to like what she had to say; I had worn that same look many times.
She started with all the medical lingo of the things that the physiotherapist, speech and occupational therapist had discovered. To be honest, I have no idea what she said; Jarrett had chosen that moment to show me something or other and Max was shifting uncomfortable. But, if I could take a picture with my mind I could tell you everything about that moment: the colour of the walls, the examination table that was there, the cars Jarrett was playing with, and how Max was holding Connor and bouncing him, sneaking hugs at the same time. Then, the Dr. said something that did catch my attention, "some children with some kinds of cerebral palsy can walk; Connor is not one of those children. it is unlikely he will ever be able to sit, walk, run, or even do much for himself since his disability was Spastic Quadriplegic Cerebral Palsy." this diagnosis essentially meant that he had the most debilitating form of the disorder at all. At that moment, Max burst into the most heart wrenching sobs I have ever heard, and at seeing his father cry, Jarrett thought that he should join in. I must say I was confused at best at what to do next. I remember the Dr. asking if she could get us anything. in my usual sarcastic way, I quipped:"Kleenex"
She asked if she could answer any questions with the caveat that she knew this was a lot to take in. It might seem strange but I asked if his disability would change how he looked. To say that Connor was a beautiful child was an understatement. His skin was porcelain and his eyes emerald green. He had a smile that dimpled and sparkled his eyes. the thought of a disability taking that away from him as well as everything else was too much to bear--so I asked. her answer was that he was a beautiful child and that would not change--but was I not concerned with the other problems we were facing, was there nothing she could answer about all that?
I straightened my spine, handed Max another tissue, held Connor that much closer and looked at her and said, " You don't know me and you don't know my son. Do not tell me what he cannot do or will not do; Let us show you what he can.
Along the journey we met many therapists and helpers. Connor did learn to sit on his own and did so until his legs were too spastic to cross. With the help of an electric wheelchair, he not only walked he ran! Many times in the opposite direction of where I wanted him to go. He played hockey, took Jujitsu, music lessons, acted in plays and ran for student council, among other things.
In school he was told not to take French or other languages because of his learning disability. he was also told in grade 9 that he would not be able to keep his A average up; he succeeded in maintaining his A average up to the end of his Bachelors degree!
Next week he graduates from Carleton University with a Honours Degree in the combined major of Humanities and Religion with a minor in English. He is graduating with highest Honors and is the winner of the Senate medal for Humanities--granted to the student with the highest level of achievement in their program. He not only can walk and run but now he flies!
So embrace the idea that you can change the world or anything else that you seek out to try. Never discount that ability. as Margret Mead said: “
Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.”
Margaret Mead
Tuesday, 15 May 2012
I am proud to be Canadian: this is one reason why!
there are many reasons to be proud to be Canadian. One is that we say what we mean. we do not make promises that we cannot keep and we try not to be hypocritical. (for the most part) I think that the USA cannot make the same claim.
The United States were founded on a principle of division between church and state. "Separation of church and state" (sometimes "wall of separation between church and state") Thomas Jefferson used this as the inspiration to the first amendment of the constitution. It was such an important concept that they built the country on it; a country that they went to war to obtain.
Canada simply and politely, asked Queen Victoria if we could please leave the Commonwealth. indeed, we didn't even feel the need for a formal constitution until it was brought into effect in 1982--115 years after the passing of the British North America act, which created our country. we just sort of figured that everybody knew these things and played by those rules. The US has spent countless hours updating, changing and amending their rules to make sure it "kept up with the times." Yet time and time again, although Canadians are seen as the boring, uptight, citizens, the USA proves that their is truly no cure for stupid.
But, I digress.
Last week, North Dakota passed a law banning the making of a law legalising gay marriage. Division of church and state; forward thinking??? I think not! Their own President, Obama and Vice-president Biden, felt the need to comment on this stupidity!
Canada on the other hand, has it covered. In Fact, we really don't care who gets married. In 2005, 7 years ago, we passed a NATIONWIDE bill legalising "gender neutral" marriage (we didn't even feel the need to put in "same-sex"). In other words we don't really define who gets married, we will just protect your rights if you are interested in becoming married--no matter who you are or who you want to marry.
The government, however, did not tell the churches what to do. this is simply civil marriage and the legalities involved with it. Some people may have thought that we were suddenly becoming progressive, but I think that we couldn't stand all those tax dollars going to waste. Marriage is big business. So is divorce!
(Personally, i think the lobbyist's are doing it wrong. they should engage all of the wedding planners, caterers and other wedding industry people to help out and have them recognise the economic impact of all these weddings not taking place; a nationwide bill would pass in the US senate so fast it would make your head spin!)
There is no reason, other than misinformed and misguided religious beliefs that could have led to North Dakota's overkill in their anti-samesex marriage law making--they are combining church and state. they are basing their lawmaking on erroneous and archaic ideology that is based on mistranslation and misinterpretation of an ancient biblical text.
certainly, if you have a secular government, based on a division of church and state, then it follows that the government has no right looking windows into peoples bedrooms (one of the few things that Trudeau said that I agree with!) yet time and time again, various states in the USA pass laws, banning same sex marriage based on the biblical-judeo-christian doctrine that they have misinterpreted.
So yes, I am proud to be Canadian. I am sure we are just as boring and stolid as the world sees us, and may be that was our impetuous for creating a law for same sex marriage: we didn't want anyone living in sin! but, still this week, I am proud to say that I AM CANADIAN!
http://www.usatoday.com/news/washington/story/2012-05-09/obama-gay-marriage-election/54866752/1
The United States were founded on a principle of division between church and state. "Separation of church and state" (sometimes "wall of separation between church and state") Thomas Jefferson used this as the inspiration to the first amendment of the constitution. It was such an important concept that they built the country on it; a country that they went to war to obtain.
Canada simply and politely, asked Queen Victoria if we could please leave the Commonwealth. indeed, we didn't even feel the need for a formal constitution until it was brought into effect in 1982--115 years after the passing of the British North America act, which created our country. we just sort of figured that everybody knew these things and played by those rules. The US has spent countless hours updating, changing and amending their rules to make sure it "kept up with the times." Yet time and time again, although Canadians are seen as the boring, uptight, citizens, the USA proves that their is truly no cure for stupid.
But, I digress.
Last week, North Dakota passed a law banning the making of a law legalising gay marriage. Division of church and state; forward thinking??? I think not! Their own President, Obama and Vice-president Biden, felt the need to comment on this stupidity!
Canada on the other hand, has it covered. In Fact, we really don't care who gets married. In 2005, 7 years ago, we passed a NATIONWIDE bill legalising "gender neutral" marriage (we didn't even feel the need to put in "same-sex"). In other words we don't really define who gets married, we will just protect your rights if you are interested in becoming married--no matter who you are or who you want to marry.
The government, however, did not tell the churches what to do. this is simply civil marriage and the legalities involved with it. Some people may have thought that we were suddenly becoming progressive, but I think that we couldn't stand all those tax dollars going to waste. Marriage is big business. So is divorce!
(Personally, i think the lobbyist's are doing it wrong. they should engage all of the wedding planners, caterers and other wedding industry people to help out and have them recognise the economic impact of all these weddings not taking place; a nationwide bill would pass in the US senate so fast it would make your head spin!)
There is no reason, other than misinformed and misguided religious beliefs that could have led to North Dakota's overkill in their anti-samesex marriage law making--they are combining church and state. they are basing their lawmaking on erroneous and archaic ideology that is based on mistranslation and misinterpretation of an ancient biblical text.
certainly, if you have a secular government, based on a division of church and state, then it follows that the government has no right looking windows into peoples bedrooms (one of the few things that Trudeau said that I agree with!) yet time and time again, various states in the USA pass laws, banning same sex marriage based on the biblical-judeo-christian doctrine that they have misinterpreted.
So yes, I am proud to be Canadian. I am sure we are just as boring and stolid as the world sees us, and may be that was our impetuous for creating a law for same sex marriage: we didn't want anyone living in sin! but, still this week, I am proud to say that I AM CANADIAN!
http://www.usatoday.com/news/washington/story/2012-05-09/obama-gay-marriage-election/54866752/1
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