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Wednesday, December 23, 2009

Weary End of the Year Thoughts

I am weary and sad. No doubt this is tied to the holiday season and inevitable end of year retrospection. Another variable is the supposed good cheer one and all are feeling. For me, a person with a disability, strangers seem to suddenly want to help me or are quick with what they think are positive or cheerful comments. In the past week I have "complimented" multiple times about how I get in and out of my car. For instance I have been told it is "amazing the way you get in and out and even drive yourself". Or yesterday when grocery shopping a woman told me I was "an inspiration for the way I push my grocery cart around". I would like to think these ignorant comments are well intended but their increased frequency during the holiday season just pisses me off. I consider this a form of social harassment--a way of reinforcing the superiority of those that are bipedal. Such inane comments all share one thing in common: the assumption that people with a disability are inferior. The focus is never on what can be done but rather on what cannot be done. Disability is a personal and collective tragedy that prevents a person from doing the ordinary. This line of reasoning makes me furious.

I use a wheelchair and cannot walk. I don't think using a wheelchair is a big deal or significant loss in terms of mobility. My means of navigating the world and the social environment is different from the norm. Few people that navigate the world on two feet think this way. Using a wheelchair carries stigma. This was the case thirty years ago when I started using a wheelchair and not much has changed. The worst part of the stigma associated with my use of a wheelchair is the assumption my life is inferior. The routine is not possible and when I have the audacity to be ordinary I am lauded as amazing. Something amazing is going on but it has nothing to do with getting my crippled ass in and out of my car or pushing a shopping cart around the grocery store. What amazes me is how ignorant people are. Surely in the last thirty years society, that is me, you and your neighbors, should have concluded using a wheelchair is a different means of getting around the world we live in. Using a wheelchair should signify nothing socially. But this idea is a pipe dream. I don't see the stigma attached to using a wheelchair changing in my lifetime. For the longest time I thought my presence as well as the presence of others that use a wheelchair was enough to generate change. This was wishful thinking and wrong in retrospect. Now I think all people with a disability that yearn for equality must not simply be present but need to assert themselves. This is easier said than done. I am polite to a fault and do not like confrontations. And during the holiday season no one likes to be Scrooge like (though my son thinks I am perfect for this part). Combine this with the false belief that people with a disability are bitter or angry because they have a disability and I often find myself in a Catch 22 situation. How does one respond when a mother of two thinks I am amazing because I can push a shopping cart? Getting angry in the face of such ignorance is not helpful. An explanation that such a comment is inappropriate is too time consuming. So how do I cope? I scowl a lot and do my best to appear unapproachable. I avoid eye contact with adults, I am not open with strangers, I never answer direct questions, and am wary at all times. While this may protect me from some of the worst social abuses it does not exactly help my social life or foster change.

I wish I had the solution that would foster revolutionary change for all people with a disability. The bias we people with a disability encounter is overwhelming. It is the one underlying theme of my life as an adult. That is the assumption that I am less of a human being, that I have less rights, lesser expectations, hopes, dreams, and ambitions. I have consistently rejected this but it has not been easy. So during this holiday season I mourn for a simpler time that I am not sure ever existed. I wish I was shopping for the coolest Lego set for my son or making a ginger bread house with him. I wish he was once again sitting on my lap as a toddler telling me "Go, Daddy Go". These memories are a mix of fantasy and reality. The reality is my son was the cutest little boy and in spite of inherent human flaws we all posses a fine young man with a bright future. There is another reality though--having my ability to parent repeatedly questioned by strangers, doctors, teachers, and all those that saw a wheelchair and not the human being sitting in it. These unpleasant thoughts have been on my mind as I have been following via newspaper articles the experiences of Kaney O'Neill. O'Neill is a 31 year old mother of one and quadriplegic. Her child's father, David Trais, a self-employed Chicago attorney, has sued Ms. O'Neill for full custody of their son alleging that she is "not a fit and proper person" to care for their son. In Trais 'opinion her disability "greatly limits her ability to care for the minor or even wake up if the minor is distressed". Since a landmark 1979 California Supreme Court Decision a parent's disability cannot be used against them in custody hearings. The court ruled that "the essence of parenting is not to be found in the harried rounds of daily car pooling but rather in the ethical, emotional, and intellectual guidance the parents give the child throughout his formative years." Amen! But in the legal system the idea that a parent with a disability is equal to a parent without a disability is pure fiction. Bigotry abounds against parents with a disability and the amorphous belief that "the best interests of the child" always comes first. Those best interests translates into parents without a disability getting custody. This sentiment was perfectly expressed by Howard LeVine, a lawyer with 40 years of divorce and custody experience. LeVine was quoted in the Chicago Tribune as stating that Trais' concerns are well founded. LeVine stated "Certainly I sympathize with the mom but assuming both parties are equal in other respects isn't the child obviously better off with the father? What's the effect on the child, feeling sorry for the mother and becoming the parent?" While I find LeVine's comments offensive I do not think they are unusual. The focus is on what a person, in this case a mother with a disability, cannot do. I wish O'Neill well in her custody battle and can answer one of Mr. LeVine's questions: "What's the effect of on the child?" If my son is any indication, he has learned much from me as a parent with a disability. He understands the impact bigotry can have on a person from experience. He understands civil rights extend beyond the color of one's skin and include disability rights. He understands injustice and the difference between what the law states and reality. He has a nuanced appreciation for the struggle of all minority groups. He does not think of me as being different. I am simply his father, a man that love him very much. So, despite my grumpiness I know I am a lucky man. I live in a nice home, drive good car, have adequate employment, my son attends a good school and is looking forward to going to college. I have no right to be so grumpy and yet remain extremely sad.

17 comments:

emma said...

"What's the effect on the child, feeling sorry for the mother and becoming the parent?"
This is total BS!! Something used by the lawyer in an attempt to strengthen his clients case (I know I'm stating the obvious, but really, that is so offensive!!).

I'm also suprised at this "season goodwill" and stomach churning comments from strangers you've received!

As a parent I've heard some appalling comments which have made me withdraw to some extent from society - which makes me angry, why the hell should I!! And why should my son!!!

Things do change, slowly, snails pace. I hope your sadness will not be for too long.....

william Peace said...

Emma, I am back from multiple errands and ready to punch someone in the nose. Bad Christmas music abounds and if one more person asks me if I need help I will scream. My sadness will pass as soon as I get skiing after Christmas and return to work in January.

Matthew Smith said...

Regardless of Kaney O'Neill's disability, the choice is between a house with three women, including the mother (plus a maternal uncle), and a single dad. The former are those who would have spent most of the time looking after the baby anyway while the lawyer dad was out working.

I noticed the ridiculously bigoted remarks in the comment box - much of it relating to the boyfriend having slept with a quad. Still, given that the main plank of his case is that her disability makes her unfit to parent, when did he come to that conclusion? He knew she was a quad before they did the deed.

Becs said...

Please forgive us bonehead ABs. It's confusing to us sometimes. In "Moving Violations", John Hockenberry refuses any offers of help in one part of the book. And yet when he's trying to crawl up the subway steps, dragging his w/c behind him, he gets pissed off that no one offers to help him.

Oh - it would be a miracle to see me pushing a shopping cart in a supermarket. I loathe grocery stores and haven't been in one for nearly six months.

william Peace said...

Matthew, I saw the nasty comments in articles about O'Neill. I chose to ignore them as comments are often extreme views or in this case I hope are out of the norm. O'Neill has an adequate income and plenty of physical support to care for a child. There is no doubt that the father is simply using O'Neill's disability to gain custody. He is relying on antiquated beliefs and not so subtle bigotry using the smoke screen of the best interests of he child.

Becs, I love that line "bonehead ABs". The line between help and no help is fine and ever changing. Hockenberry in an otherwise outstanding book does not express this distinction well. I am happy to get help provided the person helping understands they are not helping me as much as they are saving me time. I forcefully reject help from people that think I am dependent or incompetent. Thus I virtually never say yes to a person that wants to help getting my wheelchair in and out of the car. The assumption here is that I need their assistance.
On supermarkets--they are an easy one stop place to shop. When careful they are good places to shop. But they are also filled with bad over priced food that we Americans seem to consume in great quantities. I understand why you avoid them. But I wonder how and where you shop? Speaking of food, have you seen Food Inc?

FridaWrites said...

Yes, the catch-22 is one I feel too. I just don't see an easy solution except to make a joke that someone may or may not get--if I can think of one quickly enough.

I am really ticked off about the custody case--she has support, so no argument holds water. It reminds me of the U of Michigan student who lost custody in the mid-90s because she was a working mom--dad also worked and went to school.

Becs said...

How I shop:
- Angel Food Ministries. This is not limited to people of any faith or no faith. It's not limited by economic means. If you've got the money (or SNAP card), sign up and you'll get a pre-filled box of fairly decent food. It can hold a family of four for a week. For a singleton, it can last a month. They usually include eggs and UHT milk. Such a deal.
- BJs. To some this may qualify as a supermarket. I buy fruit and salad stuff there, along with cat necessities. I do this maybe once or twice a month. If I plan it right, I don't have to go anyplace else.

That's my scheme. So far, so good.

If I'm feeling decadent, I order from Peapod.

Becs said...

PS - Food Inc. is in my Netflix queue. I read Michael Pollan's latest. I'm lucky enough to know a woman who raises laying hens, so I get beautiful eggs although at a premium price. I'm not well-heeled enough to buy a half-share in a sustainable farming / community farming deal. I try to buy as locally as possible but sometimes, it isn't.

william Peace said...

Frida, The entire justice system is biased against people with a disabilities. Most people lose before they ever enter our hallowed halls of justice.

Becs, Wow, Angel Food Ministries website looks amazing. The food is inexpensive and what they show is quite good. I am glad to know they exist as too many in this country go hungry every day.

On Food Inc. You will never look at a chicken or cut of beef the same way. We have an epidemic of obesity for a reason that extends well beyond what people consume. The film details the why and origins of our food supply. I am sure you will like it.

Matthew Smith said...

I was just going back through my friend Kim's tweets and found one that didn't make it to my smart phone:

Why is it when you search for "quadriplegic parent" in Google it asks if you meant "quadriplegic patient"?!

william Peace said...

Matthew, Yikes, talk about ingrained prejudice. Of course quadriplegics are patient NOT parents. UGH! Just saw a good article about O'Neill in TheCurvature. I will post more about the custody case when we return from a short Vermont ski trip.

Ellen said...

WELL SAID. I'm the mom of a kid with cerebral palsy. Max can walk, but cannot talk or use his hands very well. I cannot tell you how annoying I find the pity looks, all year round. Or, I hear, "He's got SUCH a great personality," as if he's lucky he has that because he's so otherwise screwed. Ticks me off. Max doesn't notice, though.

Your blog is extremely inspirational. I know that writing mine lifts me out of the grumps, I hope yours continue to do the same.

FridaWrites said...

We use Angel Food too--it does save time as well--and we add a box of the fruits/vegs. Fast order and pickup. The quality isn't always exceptional, but a lot better than eating fast food/frozen meals when you're short on time/ability.

There's also a website called Alice.com where you can order "dry goods" (I sound so 19th century)--that can save a lot of wear and tear plus time--plus they have decent prices. Right now we are couponing/shopping sales to an extreme at the stores, but that's something I would like to use in the long-term because of all the increased physical/time demands on our family.

awesomenorms said...

I like this post and like Ellen I have a cerebral palsy child too. He cannot walk straight and Oh the stares we get when we walk down the street. Even when we're past them already, they're still staring. We get all kinds of stares from people and I really get pissed off....why do people have to stare?

e said...

Hello Bill,

After this post, I am livid on that mother and child behalf...
It isn't like the womans' disability was a secret when the child was conceived...

Apart from that, I am still learning how to get around, and have not mastered the grocery
cart...

I have a question: I remember reading that you flew somewhere with your son and the airline did a great job regarding your chair...

Can you tell me what they did? My rigid frame ti-lite doesn't fold, and I am afraid despite the assurances from Southwest, of things lost or broken.

Thanks for posting this.

Happy New Year!

william Peace said...

Frida, Glad to know you have used Angel Food. Quality regardless of how one gets food is always an issue. I never heard of Alice.com What an old fashioned concept of dried food goods. Lots of good food items can be dried. We grow tomatoes in the summer and I dehydrate them and we eat them all year long. They taste great dried.

Awesomenorms, Being stared at ranges from curious, polite to point blank rude. I know exactly how hurtful the rude stares can be. Curious but polite people don't bother me but I have no patience for rude stares. When stared at in this way I stop what I am doing a stare back. Well, maybe not stare back but rather glare back. I think this works well because you are reflected rude behavior back into the face of the person doing the staring. If you do this in a passive way you are also teaching your child to assert his or her rights.

E, Flying is a hassle 99% of the time. Airlines are uniformly terrible and discriminatory. The norm is to stow a rigid frame chair in the belly of the plane. If they do this, be sure to remove anything that can come off like a foot strap or cushion. Before they take the wheelchair be sure to get a gate claim for the wheelchair. It is also the norm to be the first person to board (they call it pre-boarding) and the very last person off the plane. As for airlines, Delta and Northwest are rigid to a fault and the worst from my experience. I have not flown Southwest. The best experiences I have had were with Jet Blue. The sad fact is much of your experience is dependent upon dumb luck and the attitude of the flight and ground crew. If you are not treated with respect assert your rights! The FAA has a great website and it helps to know your rights as a passenger with a disability. All airlines have a little brochure about this they are required by law to provide. Good luck!

lifeofthedifferentlyabled said...

thanks for this refreshing post i couldnt agree more that disability doesn't impact my social functions despite being a chair user myself. I have enjoyed this refreshing look at life with a disability and plan to share your blog with my readers, and in turn I hope you and your readers come check my blog about life with Cerebral Palsy out at http://lifeofthedifferentlyabled.wordpress.com/
thank you again!