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Saturday, February 13, 2016

Tangled Day

I was up very early this morning. I did not sleep well. Actually I did not sleep at all. I am unhappy. I have no reason to be unhappy. Well, maybe I do have the right to be unhappy. In the words of my good friend Stephen Kuusisto yesterday I had a "tangled day". Entanglement and disability go hand in hand. Life with a disability is always an adventure. I was in my little town of Cazenovia yesterday. I needed to pick up my mail and put gas in my car. Ordinary and dull errands. I merely wanted to be outside and get things done before I saw my son for lunch. I shoveled out my driveway--a chore I love. I was content until I pumped my gas. I was accosted by a man who was upset. He got directly in my personal space, his face flushed with anger. "What are you doing out in the snow and cold! People like you are medically fragile. You need to go home now. Where are the people who take care of you". This is unusual. People typically do not get close enough to my body for me to feel threatened. In a guttural tone I replied "Leave me alone". Thankfully that is exactly what he did. Off to the post office. I am looking at my mail when a man taps me on the shoulder. Without any warm up I was asked "Have you seen the BBC documentary Simon's Choice? This is a documentary about assisted suicide. I answered: "Yes, I watched it last night." Deeply worried about the direction this unwanted conversation was going he replied: "Why don't you want to die? I have seen you around. We put down paralyzed animals. We should do the same with people. You can't walk or enjoy life. Your existence is depressing to all". How the hell do I respond to this statement. This man is a bipedal ableist. He is likely a pillar of the community and beloved by all. He is a Christian do gooder and his type abound in Central New York. No doubt he is a hard worker and devoted family man. He could be a member of the PTA or school board. I am sure he is a church goer. There is only one thing I know about this man: he wants me and all people who are paralyzed dead. He is eager to talk about it. I will not give the bigot the satisfaction. I reply "I have nothing to say to you. I compile the mail and quickly leave the post office.

My day is saved by son. He loves me. He values my life. He asked me for advice. I am proud of him and hope he is proud to call me dad. I am delighted for him as he has found a real job. He now works for a high end internationally known hotel chain. The job has potential in terms of professional growth and could enable his travel lust. I am delighted to see him happy and positive about his future. To celebrate we went to Wegmans and treated ourselves to some luxurious food we rarely purchase. We had an absolutely delicious meal. He borrowed my car for the weekend and was thrilled. No bus rides to and from work this weekend.

The above is the perfect illustration of a tangled day. Only people with a disability will feel an entangled day in their soul. I never know what people will say to me. I never know exactly how my day will go. I am forced to deal with a bigot one minute and the next I am sharing a meal with my son while my beloved lab Kate hovers nearby. Loved one moment and the next a total stranger suggests I should be dead. What does a sleepless cripple who had an entangled day do? Wake up well before dawn and read. As dawn approaches I bundle up. It is likely below zero and snowing. I love this deep chill. I love to see Kate's black coat covered in snow. The contrast of black and white amuses me. We do not stay outside too long. The dawn light approaches. It is truly silent. I am very much alone. No neighbors have lights on yet. The animals and birds are silent. The frozen lake is wind swept by snow. I feel at peace (no pun intended). This sort of bitter snow causes the metal of my wheelchair to creek. Only I know what this feels like and it warms me. I close my eyes, Kate at my side, wind in my face. I spread my arms wide apart. I love my crippled body. I love my life. The idea that death is preferable to life with a disability is laughable. I will never bow down to baseless disability based bigotry. Never.


Unknown said...

I'm curious as to why you thought this man a Christian. I no longer attend church myself, but I never encountered the attitude that disabled people should be euthanized. It was always the opposite. A pro-life attitude abounded, even if there might have been an ableist undertone with it.

william Peace said...

This is an interesting comment. I would consider the Christians I have met to be uniformly hostile to my presence. The sole exception being those who are active in opposing assisted suicide legislation. This sect of people are indeed pro-life and make curious political bedfellows. My personal experience with Christians is overwhelmingly if not entirely negative. Attending church, especially Roman Catholic mass, is an invitation for abuse. I avoid all christian churches because it is an openly hostile social environment.

Moose said...

Wow. What entitled, ignorant assholes.

I'm sorry you dealt with that. That means little, because it's just words of comfort. What I'm sorry for is that people like that not only exist, but think that they have the right to open their yap and say such stuff.

It's easy to armchair quarterback. I'm sure you're also thinking of the "I should haves. I should have said this. I should have done that. Or the one that's starting to make my eyes roll out of my head, "This could have been a teaching moment!"

A single disabled person is not the spokesperson for all disabled people. A single ethnic minority person is not the spokesperson for every one of that minority. Sometimes there ARE teaching moments, but I'm starting to see an overall pattern (in general) of disabled people thinking they have to "fix" all the bigots out there.

I think that the problem is bigger than one person can handle over and over and over again without getting burned out. There's a impossibly large section of non-disabled people who need to learn that the disabled are not on this planet for their use as someone to condescend to, judge, or use as inspiration.

It sounds obvious: the issue is people who look at disabled people and don't see past the disability. The problem is, I think, an overall societal problem of lookism, where some people are perfectly comfortable making judgements based solely on how they perceive someone someone looks.

Unfortunately, it's a problem deeply ingrained in our society, and fixing it is going to take an enormous crowbar.

And I'm preaching at the choir again, aren't I? :-)

william Peace said...

Moose, As usual you hit the nail on the head. The older I get the less inclined I am to educate ignorant bipedal people. There are over 300 million plus Americans and they are an ignorant lot. I really am wishing for a community of crippled people. I just want to live free of angst about the next horrible thing some person will say to me. I could easily become a hermit.

BLOOM - Parenting Kids With Disabilities said...

It's unbelievable to me the number of strangers who approach you. Is it consistent whether you're in a small town or a big city?

I am flabbergasted by the second comment and sick that these are the people roaming our earth. Maybe you should wear a cool set of Beats while out.

I'm not sure if you saw the piece I wrote about the study on doc-assisted suicide in the Netherlands for people with depression and other psychiatric conditions? Two of the 66 had autism. In a Belgium study, 19% of 100 who were approved for assisted suicide had autism.

More than half of the people in the first study spoke of intense isolation and loneliness and in a quarter of cases the doctors couldn't come to agreement on whether the person met the criteria -- but it proceeded anyways. It was chilling to read this study.

william Peace said...

Bloom, There is some consistency with the people that approach me. I am always alone when I get these comments. If Kate is with me or a human being this sort of interaction does not occur. In a rural setting the cultural environment is a small conservative predominately Christian population known for its wealth and architectural heritage. That describes my town to a T. I get comparable comments when I am again alone and in a densely populated urban environment such as New York City. The key variable is being alone.

Yes, I saw what you wrote r.e. assisted suicide. I have been going through the recently released 2015 data from Oregon Death with Dignity Act. I am also gathering material about the movie Me Before You that will be released in June. This will be very bad.

Kathylapan said...

I became disabled five years ago. I've found that people who knew me before, are more likely to say things like "I couldn't live like that" or "if that happened to me, I'd kill myself". I think its supposed to be a compliment that I am so "strong" I haven't given up on existence yet.

Rarely has it been strangers, though it has happened.

Church people are more likely to tell me they're "praying" for me, which is about the same as saying "your life is so pathetic I've decided you need intervention". I'm included on the list of prayers just like starving kids in africa.

I can walk, with help and for short distances. People don't know what to do with a cripple who can walk. I get asked where my wheelchair is or accused of faking a disability.

Sometimes people suck.

Unknown said...

I'm a bipedal, (hopefully no one ever sees me as ableist) but my mother lived 60 of her 76 years with Multiple Sclerosis. As I'm sure your son will attest, loving a parent with a disability is a unique experience in learning sensitivity and appreciation of others and their circumstances, whatever they may be. We've encountered so much ignorance and negativity in the non-disabled world. I know Mom faced many tangled days in her life. On a particularly difficult day I remarked that she never complained. Her reply- "I've got nothing to complain about." I think it's hard for individuals without disabilities to grasp the fact that life really is okay regardless of one's physical ability. Mom's been gone nearly two years, and I still get peeved when someone tells me how wonderful I am because I chose to care for her 15+years. It wasn't a choice so much as a way of life that evolved over the years for us. I left the institutional nursing environment to become a direct care worker in a community and home based care setting back in the eighties. Long before Mom needed assistance with ADLs. Your "do-gooders" see me as some sort of hero and it irks me. I'm not a hero and I didn't love my mother for the accolades, I did it because she was my mom.

william Peace said...

D.A. Charles, Thank you for your comment. Having a parent with a disability pre 1990 era was indeed unique. Thanks to social advances having a parent is becoming increasingly common. You might be interested in an essay I wrote about being a parent with a disability. Here is a link:

Nessie Siler said...

I wish I could say that I can't believe such things were said to you. People seem to have absolutely no filter, No idea that anything coming out of their mouths could be remotely hurtful. Because they didn't "mean" it that way. Well, whether they meant it or not, some things said are indeed beyond the pale, and you are not required to respond no matter what they may think.

I was once prayed over, during a meal at McDonald's. In Spanish. He did this without my consent. There was a language barrier. I assume the young adult doing this was trying to drive the devil out. I know what Diablo means, and the word featured prominently in his discourse. Needless to say, I seldom visit there anymore.

Some people just have no idea...