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Wednesday, January 23, 2019

Unwanted "Help" and the Dangers of Ableism

A few days ago I read a tweet written by Bronwyn Berg that deeply resonated with me and many others with a disability who use a wheelchair. Berg tweeted:

If you see a person in a wheelchair (especially a woman) being pushed by someone and she’s screaming Stop! No! Help! For the love of humanity help her!
A guy grabbed my wheelchair today and just started pushing me, not a single passerby helped even though I was screaming for help.

The sudden unexpected "help" pushing a wheelchair presents the most dangerous social experience I endure on a regular basis. I have never understood this sort of unwanted "help". I cannot imagine the level of arrogance coupled with ignorance required to impose "help". In my estimation imposed "help" is an assertion of social superiority and perceived physical dominance. When a stranger suddenly starts pushing my wheelchair I know the social interaction is going to go badly the second I refuse "help". Unwanted "help" when refused politely or firmly instantly changes the social dynamic. The results are predictable: "help" instantly turns to anger and either verbal or physical assault. The only analogy I can think of is a uniformed police officer who pulls a car over for a routine traffic violation that suddenly and unexpectedly turns from into a life and death struggle with another person. While I have never feared for my life, when unsolicited "help" is imposed I am instantly wary and become acutely aware of my surroundings. I know without a doubt I am on my own--just like Berg experienced. Bystanders are useless. What I look for is an out--my total focus is to get away from the person imposing "help". No matter what transpires when "help" is refused I know danger is at hand. A few example of imposed "help" should suffice:

Washington Dulles airport late at night. I am killing time before my flight and on my way to the bathroom. I have my brief case on my lap as I am heading up a slight incline. Suddenly I feel two hands on my back pushing hard. I almost drop my brief case and fall out of my wheelchair face forward. For balance and to stop, I grab onto one wheel and turn around to face the person imposing "help". The beneficent smile turns to rage when the person can no longer push me forward. Suddenly I am the problem. In this instance I was told to shut up and be grateful for the push. When I refused I was loudly told people like me are bitter and angry. A stand off ensues while others silently look on. No support is offered. The person storms off to accolades from others.

Heading into a store on a strip mall. I have the door half open when suddenly a man reaches over my head while stepping in front of me. Using the door to support my front torso, I almost fall while the man cheerfully says "let me get that door". He is standing in the doorway and I am backing away. When I politely say "I don't need help" his face turns fire engine red and he screams "I hate you bitter cripples. I was trying to be nice but no, you just shit on everything". With his diatribe over he slams the door in my face.

Last fall walking to the light rail station. I am going up a long hill when I hear a car screech to a halt. A woman jumps out of the car into traffic and runs full speed towards me. She is yelling "I will push you! Where is your care taker? You cannot be alone." We enter into a strange dance as she tries to get behind me while telling me "I will push you". After a few minutes she leaves muttering about what an ass hole I am.

Downtown Denver 16th street mall. A homeless man or person with a significant mental illness stalks me for eight blocks. The streets are crowded and there is a police presence. At a red light the person in question sneaks up behind me and starts pushing me into traffic against the light. I grab one wheel and turn to confront him and loudly say no. Heads turn and tow strangers in unison say "give the guy a break, he is only trying to help you". No I reply "he is trying to extort me and asking for $10 to push me". Afraid for my safety, I walk over to nearby cops who tell me to get lost and be kind to others who are helping me.

Getting into my car at a gas station. A stranger runs around my car and pulls the wheelchair away from me. "I will help you. Where are the wheels and how do I put them on". Essentially I enter into a tug of war over my wheelchair frame while being told what an ungrateful jerk I am.

Every wheelchair user I know dreads the sort of imposed "help" described above. This is why Bronwyn Berg's tweet resonated and in a day had 65,000 likes and 20,000 retweets. I tweeted my reply to Berg and the tweet response was picked up by the BBC and CBC news. 



I cannot truly express how demeaning and frightening unwanted "help" is. In disability rights and disability studies scholarship I often hear and read that we should always assume competence. For me it is less about competence than it is about human adaptation at its best. Regardless of the disability, we humans adapt like no other animal. I think adaptation every time I see a blind person teamed with a guide dog. I see adaptation when I see a blind person using a cane. I see adaptation when I observe deaf people conversing via ASL and am jealous of Deaf culture. When I see a quadriplegic moving fast in a power chair I think adaptation. When I see a wheelchair user and a service dog working in unison I think adaptation. Typical bipeds do not see what I do. They usually see nothing more than a physical deficit, an inferior human being in need of help. They see and think tragedy. The fact help is not required never enters the equation. The fact a person with a disability can lead a
rich and full life is dismissed as impossible or inspiring.

Today social media has given people with a disability the means to vent and connect in real time with others. I am sure Berg was gratified to know her experience was far from unique. Like Berg, I have no interest in what others who impose "help" intentions are. As Berg noted in the essays linked above, this misses the point. "The point is never, ever touch a wheelchair without asking". Aside from the risk of injury, the fundamental issue is consent and bodily autonomy. Berg stated "Our assistive devices are a part of our body. We aren't furniture that can be moved around." And that is exactly how we wheelchair users are perceived by others--a piece of furniture that is routinely in the way. The human being using a wheelchair is not respected. Like 
Berg, these incidents are deeply unsettling. In fact a few days after her confrontation Berg tweeted: 

I keep having nightmares that someone is chasing me and I’m wheeling as fast as I can. I keep trying to hide in accessible washrooms, but something prevents me. In one dream the door was too heavy, in another it was occupied by a non-disabled person.

Berg was assaulted at two levels: first, she did not receiving support from others when she yelled out. Second, Berg felt very much alone and invisible. The fact is disability based harassment and disability hate crimes are not taken seriously. There is a cultural fiction that everyone is kind to the handicapped--my brother actually said this to me once. No. Just no. People are not kind to the handicapped. Read any text on the history of disability and you will discover a long legacy of human rights violations that are the stuff of nightmares. Think Willowbrook Institution or the Ugly Laws or forced sterilization or growth attenuation. While the law may be on the side of people with a disability in this country, women with a disability are a minority within a minority and are at a greater risk for violence. Women with a disability for instance are twice as likely than non disabled women to be the victim of a violent crime. Women with a disability are also more likely to be sexually assaulted. No doubt Berg knows this all too well. 

Imposed "help" transcends borders. Imposed "help" takes place in Canada, America, England, and as far as I know most industrialized nation states.  As a wheelchair user, I remain wary of others. When in public I am never truly relaxed. My guard is always up no matter where I am. I am all too well aware I live in a hostile social environment that is not constructed with me in mind. When imposed "help" rears its ugly head I am reminded ableism is rampant and dangerous. If you do not believe me ask Bronwyn Berg. Indeed, she is the expert and I hope she does her level best to undermine imposed "help". 

Tuesday, January 15, 2019

Wheelchair Update: Apex at One Year Old

My wheelchair turned one year old this month. It has been an interesting year adapting to my wheelchair. Initially, I was worried of falling. I felt seriously tippy and unstable. I now understand why so many wheelchair users have anti tippers attached to the frame. However, I am way too old school to use anti tippers. In my experience anti tippers get in the way when going up and down curbs and prevent one from popping a wheelie. Writing this makes me feel old as I wonder if these necessary skills are still taught at rehabilitation hospitals. Based on my observation of newly minted paralyzed guys I see I doubt it (in Denver it is easy to spot such rookies in part because Craig Hospital has a dominant presence). In the absence of anti tippers I simply learned front, rear, and side balancing points. I have almost fallen many times and can now feel when I am at a point of no return.

Learning ones tipping point comes with some risk. I took a heavy fall two months ago. After I fell I was distressed to learn that I cannot get from the floor back into my wheelchair independently. The 85 degree angled front frame on my new wheelchair is a far cry from the shallow or longer 60 degree angle of my old wheelchair.  At 60 degrees I had more options for leveraging myself up. Getting from the floor to the wheelchair was once something I did with ease but over the last decade this has gotten much more difficult. My goal this spring is to work on regaining this essential skill.

On a regular basis I get email from people asking about my new wheelchair. I understand why people reach out. Wheelchairs are incredibly expensive, take weeks, and more likely, months to be manufactured. Sales are typically final--virtually no new wheelchair can be returned. Worse yet, wheelchair evaluation clinics are ethically compromised by exclusive contracts with a limited number of manufacturers and durable medical equipment outlets. This does not even address the long waits for a wheelchair seating evaluation. The result is objective non biased information is exceedingly difficult to come by. Good luck trying to find wheelchair reviews online you can trust. They simply do not exist or are quite antiquated--think many years old. I tell people that my Apex wheelchair with the expensive carbon fiber frame upgrade is well worth the money. The same can be said for upgrading the rear wheels. I upgraded to 24x1 Spinergy Spox rear wheels. In my opinion, Spinergy currently makes the best wheelchair wheels and wheel accessories on the market. I also learned there is a world of tires that now exist. And yes those tires are expensive and another upgrade. Via Motion Composites, I upgraded the front wheels to Newton wheels as well. To these upgrades I added clothing guards, and scissor brakes. In essence do not be fooled by the advertised sticker price of any wheelchair. By the time one is done upgrading various components, and believe me those upgrades are a must, the price of a wheelchair can easily reach dizzying heights way beyond the listed price. The upgrades I added ended up in the thousands of dollars.

Overall, I could not be happier with my new wheelchair. One huge variable remains unknown--how will the carbon fiber frame hold up over time.  This is what makes the Apex and any other carbon fiber frame wheelchair a real wild card. If the frame cracks or fails theoretically it can be repaired but that would take a long time. I also have no faith the warranty would honored by Motion Composites. This is not a knock on Motion Composites but the wheelchair industry in general. The warranty on any wheelchair in my experience is worthless. A reason is always found to not honor the warranty. If you doubt peruse back to my posts about the owners manual that came with my wheelchair.

In terms of wear and tear, I have had two minor issues. First, the upholstery the wheelchair came with lasted a mere four months. That is an unacceptable lifetime. I let the Motion Composites Colorado sales representative know and he was kind enough to send me a new set of upholstery at no charge. Second, a bearing in the front wheel fell apart when I was cleaning hair out of the front axle. Again, I contacted the sales representative and he kindly sent me a set of bearings. Any wheelchair user knows that the front wheels take a beating and hair destroys bearings over time. Hence I remove the front wheels every Sunday and lubricate the bearings in the hope I will extend the wheels operational life. This is not a time consuming task. I do have some concern about bearings in general. Years ago I expected bearings to last a long time. Today I have no such expectations. I plan to replace all the bearings on a yearly basis. I grumble about this as I consider a year life span unacceptable. However we are talking about a $15 part that is easily replaceable.

The main difference between my old wheelchair and my new wheelchair or any contemporary manual wheelchair is philosophical. My old wheelchair was designed to last a lifetime. The frame served me well for nearly 40 years. It was exceptionally hard to work on but was virtually indestructible and rarely failed. In contrast, modern wheelchairs, mine included, are technologically advanced but require constant attention. Aside from removing the front wheels every Sunday, I thoroughly clean the entire wheelchair and check every single component. In short, my wheelchair is treated like a Ferrari. It is spotlessly clean and nothing is left to chance. New wheelchair enthusiasm it seems lasts far longer than one year.

I cannot imagine owning my wheelchair without having a bevy of expensive spare parts. Over the last few months I have ordered many bearings, brakes, forks, foot rest, hardware, and wheels in case of a malfunction. The sales representative for Motion Composites has been outstanding and responsive. For this reason alone, I highly recommend my wheelchair. This sort of responsiveness is exceedingly rare in the wheelchair industry. Perhaps I am lucky as the sole sales representative in Colorado is great. The sales representative in other states could be terrible. This would surprise me but you never know. If you own a Tlite or Panthera wheelchair good luck getting a sales representative reply to an email.  As for parts, my guess is getting any part for a Panthera would take months because they have virtually no presence in North America. This says nothing of the cost which would be exceedingly expensive. Tlite parts are more readily available given they dominate the wheelchair industry in the USA but I find it painful to deal with such a large corporation. It certainly does not help that I find the Tlite to be an inferior product. It is akin to a Lego toy to me--too many cheaply made short lived component parts. Most people I know struggle to get five years of serviceable life out of the wheelchair under rigorous use.

What my wheelchair cannot do is handle a harsh Northeastern winter. If I lived in the snow belt of New York my wheelchair with narrow rear wheels and small front wheels would be useless in deep snow. I also wonder how it would handle bone chilling cold. Here in Denver we get a few days of frigid temperatures but nothing like New York or Vermont sub zero temperatures. I miss those frigid days as I could feel the steel frame of my wheelchair groan when I walked my beloved labrador Kate. The carbon fiber frame I have now does not react to the cold. The frame seems impervious to extremes cold and heat. This is quite odd to me as the only part of my wheelchair that feels cold are the aluminum hand rims. Surprising to me is the fact my wheelchair handles deep puddles, really wet weather, and slush quite well. Last week I was outside in a heavy wet snow that left large amounts of slush at curb cuts and with little effort I powered up and down without any trouble. Another environmental variable I had never given much thought to is wind. Given how light the wheelchair is, if I get a strong gust of wind behind me, say 30 to 40mph, I am going to be able to fly. Of course, heading into the wind is going be an entirely different story.

In an urban environment, my Apex wheelchair is at its best. I can literally fly through airport terminals and bus depots. The effort required to push is minimal. Sitting in a perfectly fitted wheelchair can be a real joy. I tend to move far faster than most bipeds and often enjoy weaving throw crowded Denver city streets. The wheelchair is not as adept on rougher terrain. This is more a statement only relative inexperience with my wheelchair than a design flaw. I am extremely wary of falling over backwards hence am hesitant to put all my weight on the rear wheels. As every day passes I become more comfortable this becomes less of concern. Thus over time going on rougher dirt trails will become less of an issue. The issue now is the wheelchair operator and not the wheelchair itself.

Beyond my wheelchair, the foremost problem as I see it beyond the prohibitive cost of wheelchairs is finding the right wheelchair and above all else the right fit. I see people every day in ill fitting inappropriate wheelchairs. This breaks my heart. Nothing is wore than sitting in a wheelchair that is ill-fitting. By the end of the day one will be sore and likely in pain. One should enjoy using a wheelchair--this is only possible if you have the right wheelchair in the appropriate size and configuration. This is not as easy as it sounds. It has taken me 40 years to adapt and that adaptation process never stops.