Search This Blog

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.

Friday, December 14, 2018

In Search of Empathy

Wound care appointments create significant angst. News tends to fall into two categories--good or bad. This week the news was good. My wound is healing. Relieving pressure, i.e. not sitting, is without question a successful method of physically healing a wound. Physically healing a wound however involves much more than one's skin and underlying tissue. The mental toll pressure relief takes is devastating. Depression is a natural response to being socially isolated and bed bound. Depression leads to disrupted sleep patterns, loss of appetite, and for me, jags of tears when alone. Being bed bound leads to a loss of strength and physical fitness. Surely these areas of concern should be of paramount importance to health care professionals in wound care. This is simply not the case and I find this deeply objectionable. No wound care program has ever addressed these issues in my experience. I was forcibly reminded of this fact yet again. I stated briefly and clearly to the wound care doctor that I was depressed. Indeed, I stated I was clinically depressed. The wound care nurse who had my electronic chart open checked off the box "depressed". That was the end of the conversation. No referral for mental health care was made. Such a referral must come from an internist. The physician knows I have no internist. An awkward silence ensued. I got the message. Depression, loss of appetite, hydration, physical fitness, and strength are beyond wound care's realm of expertise.

Wound care focus on a wound in a social vacuum is and always has been a shocking failure to me. I have had far too many wounds in the last 40 years. In that time wound care dressings and treatment have evolved and advanced but the lack of empathy displayed on the part of wound care professionals is heart breaking and dare I say deadly. Driving home from my appointment I thought long and hard about a remarkable essay I read by Joel Reynolds in the AMA Journal of Ethics. In "Three Things Clinicians Should Know About Disability" Reynolds outlined a set of responsibilities health care professionals should uphold and made three concrete recommendations for clinicians to institute when dealing with patients who have a disability. I found Reynolds words insightful and incredibly helpful. He did not lash out as I have against ableism. He did however write about rampant ableism in health care and drew heavily on decades of work produced by disability studies scholars and philosophers. The mere fact his essay appeared in an AMA journal is a testament to the progress made by disability studies scholars in the broadest sense of the term. This is heartening in the extreme. Yet this progress has not filtered into clinical practice. People with a disability are routinely treated badly by health care professionals--just two weeks ago I was continually referred by staff in radiology as"wheelchair". Bigotry and profiling are alive and well in institutions nation wide.

Reynolds maintains health care professionals, when dealing with people who have a disability, should be aware of the following:

1. Quality of life. Health care professionals, like much of the general public, assume the quality of life for people with a disability is poor. Study after study has amply proven this assumption is incorrect yet this myth is commonplace. 

2. The problem of ableism.  Health care professionals see the normal or typical body as the ideal. They assume all people want to function and appear to be normal. Any evidence to the contrary is suspect. Thus a patient with a disability who is content with an atypical body calls assumed beliefs into question and is thus a threat to well established practices. The assumption made is that all humans desire the ability to walk, see, and hear.  

3. Distinction between disability and illness/disease. Because ableism is rampant many health professionals confuse disability and disease as being one in the same. This is wrong and leads to gross miscommunication and erroneous conclusions. 

Building off this knowledge base Reynolds argues health care professionals need to adopt a holistic  view of disability and treat patients who happen to have a disability differently. He suggests the following:

1. Clinicians have a responsibility to develop disability humility.

2. Clinicians have responsibilities to communicate better with and about patients with disabilities.

3. Clinicians have responsibilities to recognize the authority of people with disabilities as experts about their own lives and communities and to elevate their voices.  

Based on my experience with wound care professionals, they fail miserably on all three of Reynold's suggestions. When accessing health care I communicate in a clear and direct manner yet virtually no health care professionals listen or make an effort to understand disability and the degree to which institutions are physically inaccessible and hostile to disabled people. I have not met any clinicians who acknowledge much less respect the fact I have managed to avoid most secondary complications associated with paralysis for over four decades. What clinicians see first and foremost is pathology. They seem unable or unwilling to listen and I suspect are fearful of complex patients. Complex here means a disabled body that requires atypical care, a different approach to health care, and a level of respect or agency not usually given to a patient.

Reynolds notion of disability humility is fascinating because it has the potential to fundamentally change the way health care providers perceive disability. If disability has taught me anything it is humility and with that humility comes wisdom or a different way of knowing. From the Latin, the word humilis, means low, and we wheelchair users are low in comparison to bipeds and low in social standing. As a group we are poor, too often receive an inadequate education, are unemployed in large numbers, and within the health care professions our presence is rare if not entirely absent. These grim facts remain largely unknown because health care professionals are not exposed to disability studies and disability history. At best health care workers are required to know what the medical model and social model of disability is. Like the checked box, depression, on my chart in wound care, health care workers know nothing about disability beyond the fact two models exist. Reynolds pointed out this lack of knowledge which led Hastings Center scholar Erik Parens to suggest a "binocular" view of disability--a view that fuses both the medical and social understanding of disability. Imagine if wound care professionals who correctly advise a person such as myself relieve all pressure and not sit up for more than an hour a day were forced to live their medical advice? I am not suggesting we return to the terrible disability simulations that were once popular. What I am suggesting is having health care professionals experience a dose of disability humility. Perhaps if this happened they would see more than a wound. 

As I imagine it, disability humility could revolutionize health care outcomes for people with a disability. Memoirs written by people with a disability have poignantly described the battleground and inhospitable social and physical environment of hospitals across this nation. It is well past time for fundamental change. Imagine a wound care department that practiced disability humility. Rigorous support beyond the wound itself would exist. Pressure relief would remain the go to treatment but that would be accompanied by robust social and medical support. An online support group would be automatically joined upon diagnosis. An in home evaluation would be made by a nutritionist who would arrange meals that could be made quickly. A wound care nurse would help with dressings as needed. And this nurse would know the cost of dressings and inexpensive options. A Physical and Occupational therapist would do an evaluation and recommend exercises as needed. A mental health specialist would be made available at all wound care appointments and if necessary arrange home visits. 

I am aware the above sounds idealistic and expensive. I would suggest a single additional staffer be added to wound care--a wound navigator if you will. This person would do the required coordination of specialists mentioned above. They would become the point person for patients to speak with. This holistic approach is all too rare in Western medical care. I am sure a hospital coordinator reading the above is either laughing at my idealism or questioning who will pay for all this. I would suggest what I outline would in the long run save a small fortune and dramatically reduce the time it takes to heal wounds. Patients from diagnosis to being healed would have an optimum diet, fitness, mental health and other social supports. No inappropriate dressings would be used to save money. Patients would return to work faster and require less time in a prone position. All involved would benefit. Wound care professionals would see their excellent medical advice complied with.  Patients would not experience extreme isolation and have healing time reduced. With disrupted sleep patterns this is now what I think about at 3AM.

Friday, December 7, 2018

Thank You

The response to my last post, The Abyss, was nothing short of stunning.  Dozens of people reached out to me. I received a remarkable number of emails, comments sent to my blog, Facebook messages, texts, and phone calls. The expression of concern on the part of so many was humbling. I have not as yet responded to all who contacted me but I will do so shortly. To say I was deeply touched would be an incredible understatement. I was in fact moved to tears many times. Aside from the touching words, I was taken aback by the number of people who implored me to keep writing and fighting against ableism and social injustice people with a disability routinely experience. More than a few people took me to task too. Some believed  my words reflected self pity and depression. To this charge I plead guilty. At 3AM I was feeling pitiful. I was and remain depressed. The words of appreciation and tough love have made me realize I have to live up to my own words and deeds thus I will continue to blog and fight for what I believe is important--the equal rights of people with a disability.

Since I wrote The Abyss a few things have become clear. An MRI revealed my wound has not spread to my bone. The wound is not life threatening at this time. This is excellent news. The not so good news is that I must severely restrict the amount of time I sit up. I do my level best not to sit up for more than 100 minutes in total a day. I limit my transfers as much as possible. I lay supine almost all day and night. I find this nothing short of torturous mentally and physically. The social isolation I am experiencing is severe. The depression I am experiencing is equally severe. Solutions are obvious for my physical recovery. Stay off my wound and remain free of pressure. This is solid medical advice. Such a course of action has worked in the past and will likely work again. The problem with this medical plan of action (really the lack of any action) is the social context. And here is where I think wound care departments nationwide fail their patients.

Wound care physicians are superb at caring for wounds such as mine. The physical component of healing a wound can be tricky and requires creativity and out of the box thinking. Hence wound care professionals are up to date with the latest products and are truly dedicated to healing people with severe wounds. However, all wound care departments fail miserably in three ways. First, pain management. In my experience physicians ask about pain on the initial consult but never seriously address the issue. I have been told repeatedly that as a paralyzed man I am not in need of pain medication. Again and again I have been told, with relief, that if you are paralyzed you cannot experience pain. This is simply wrong. I do experience pain. Though far from typical pain, I nonetheless feel when a dressing is changed. This an exhausting experience and hours later I feel significant pain for hours on end. No wound care doctor or health care professional has ever engaged in a discussion about the pain I experience. I can only assume I am expected to suck it up and be silent and compliant.

The second failure of wound care is the complete lack of attention paid to one's diet and exercise. Wound care doctors advise people such as myself to eat a diet high in protein. Good advice for sure. But if I am severely limiting my sitting time how do I make high protein meals quickly? I need to make, consume, and clean up my meal in 15 minutes or less. Even boxed meals such as Blue Apron advertise cook and prep times of 30 minutes. I do not have that much time sit up. I am lucky however. I have the social support of others who do food shopping for me. Exactly, what are others more socially isolated supposed to do? I have also been advised to be well hydrated. Again, good advice however this will require multiple transfers throughout the day. Those transfers are supposed to be limited. Thus eating and drinking, key components to healing, place me in a Catch 22 situation. No matter what I do I am wrong. None of this begins to address the loss of muscle mass and fitness. No physical therapy consult is arranged and any mention of fitness is met with a stoney silence or simple I don't know.

The third and biggest failure of wound care is the utter disregard to mental health. There is no question I am experiencing situational depression. I am bed bound and have been told to be pressure free and limit transfers. In other words I am house bound and bed bound. I cannot leave my home. I must spend 99% of my day in bed. How exactly can I not be depressed? This sort of social isolation would be deemed cruel and unusual punishment if I were convicted of a crime and sent to a prison. No wound care program, addresses mental health. No wound care program has an online or real life support group. No wound care programs work with mental health professionals, make such referrals or provide in home support. People such as myself are left alone and must fend for themselves for months on end. The social isolation associated with disability is magnified greatly when bed bound. Days are long and writing and basic functioning is difficult in the extreme. Healing a wound is thus crushing to one's sense of self and psyche. And I am lucky as an academic. I can work from my bed and this is highly unusual. People with a typical 9 to 5 job are screwed.

The lack of attention to mental health, in my case depression, directly impacts my ability heal. My limited sitting prevents me from making a meal enjoyable to eat and my depressed state makes me not want to eat at all. After my last appointment at wound care I was so depressed and traumatized I did not eat for three days. Why do wound care departments ignore such a vital issue? I can only assume they believe my life and others they see has less value. Surely I have no career or family or social obligations. Being forced to cancel all plans for weeks and months to come means nothing to wound care. They see a wound. I see my life put on hold. I see a bleak future.

Complicating the above, is the fact the only time I do get out is for medical treatment. As most people will tell you, accessing health care for people with a disability is deeply problematic. For instance, the MRI I had last week surely did not help my wound or mental state. Hospitals are grossly inaccessible and hostile social  environments. At the hospital staffers in radiology referred to me repeatedly as "wheelchair". When I asked where my wheelchair would be secured during the MRI I was told the hallway. When I expressed serious concern, especially about possible theft, my worries were dismissed. When I persisted I was told it did not matter; if my wheelchair was stolen the hospital was liable and would replace it. Another staffer over hearing this conversation chimed in she understood my concern because someone stole her bike recently. Yes my wheelchair and a bike are equivalent. It did not take me more than minutes to realize there was absolutely no accommodation for disability. Rigid and inflexible protocol was mindlessly followed. My different body and needs were an inconvenience to staff. None of this addresses the fact there was no place to sit in the waiting room. The lowered desk area at check in was filled with useless promotional material. I was also given a yellow hospital ID and automatically deemed a fall risk. No one asked when I had last fallen. All this took place at one of the best hospitals in the state of Colorado.

I believe wound care departments are not meeting the physical and emotional needs of their patients. It is my hope wound care professionals will take the time to see more than a wound. They need to address all the variables that go into healing a wound from start to finish. This will require a very different and far more proactive approach. Far more people need to be involved. Nutritionists, mental health professionals, physical and occupational therapy, peer support, home visits and much more. With all seriousness, lives are at stake. I am nowhere near healed and struggling mightily. Wound care is utterly clueless because they have not asked or simply dismissed or ignored my concerns. This is in no way a knock on the wound care professionals overseeing my care. This is an indictment on every wound care program in the nation. The wound care professionals I see are just doing their job and that is the problem.

Wednesday, November 28, 2018

The Abyss

I have not posted at Bad Cripple in a long time. This labor of love has likely come to an end. It is 4am here in Denver. I am deeply depressed. Worse, I do not care. For 40 years I have been passionate about disability rights and scholarship. Both fields have passed me by and left me in the dust. I have no work. I have no prospects of work. I have no place in disability rights. In this dark night I am ready to slip into an abyss.

Yesterday I was at wound care. A relatively minor wound has blossomed into a deep and potentially life threatening wound. I knew, indeed I have always known, one of these wounds would kill me. I am not critically ill yet. It is possible I will recover. The road for me however is going to be long and painful. My quality of life is absent. I cannot sit. I cannot go out. I cancelled all plans for six months. I have nothing to look forward to. My day is spent on the phone, mostly on hold, with bored disinterested people who work for a health insurance company. They inform me why nothing is covered. The hospital I visit subsequently sends the bill to bill collectors who call me me all day long demanding payment. The physician I see provides solid medical advice. But like all wound care physicians ignored are the realities of life. Pain is never addressed. Depression and mental health are not discussed. Cost of dressings is not addressed.

For 40 plus years I have banged my head against the wall and demanded to be a treated with respect. This has been largely fruitless and yielded insignificant results. Academic professional organizations remain openly hostile to disabled scholars. My fancy Ivy League credentials got me nowhere. As I sit here in bed in the dark typing into my phone I am faced with the realization my life has been an utter failure. This breaks my heart. I wanted to make a difference in the world.

I have no idea if I will post here again. I do know I will not leave this apartment for at least two weeks. Under the best of circumstances it will be months before I can sit up. The worst case scenario is a clinical cascade that will slowly and methodically end my life. Most dangerously I am okay with that. Yes, I feel that defeated. We live in a draconian world where health care is for the well insured and abled population. My crippled ass need not apply. Social supports are largely non existent. I am what I am--a drain on limited economic and social resources in a capitalistic society driven to win and profit. About the best thing I can say is that I really tried. I tried to be a good man, a good father, a good son to my parents, a good writer, teacher and scholar. I had various shades of success and failure. For now it is time to withdraw from society and others. What the future holds here and in life remains unknown. It is thus with a heavy heart I say goodbye to those who cared enough to read my many posts over the years.

Thursday, September 13, 2018

On Toileting

Decades ago the leading cause of death among paralyzed people were complications associated with the bladder, kidneys, and urinary tract system. Today, the most common cause of death among those who have survived for decades with a cord injury is cardiovascular disease. I have sent much of the last year reading various medical journals about why people with a spinal cord injury die of heart disease. There is no agreed upon variable. When compared to the typical population risk factors are significantly higher for physical inactivity, obesity, blood pressure irregularities, chronic inflammation, abnormal glycemic control, and strokes. The statistics associated with heart disease and paralysis are grim. Yet no definitive study has as of yet emerged as to why people living with paralysis are at such high risk for cardiovascular disease. A few obvious factors come into play--for example the higher the level of injury the higher at risk one is for a stroke or heart disease. Another variable often mentioned is chronic, as in decades long, dehydration. For much of the last 45 years, I have dehydrated myself on a regular basis. Accessible bathrooms may be more common now but that was certainly not the case when I was younger. I severely dehydrated myself on a regular basis when I taught, got on an airplane, went out to dinner, or went on a long drive. I did so because I knew accessing a bathroom was going to be difficult or impossible. For much of my life, I have done some rather vigorous pee math. It was not unusual for me to drink less than 30 ounces of fluids a day. Some days, I would not drink at all. For instance, if I were going to be on a long flight, an extended day where I knew no bathrooms were accessible I would stop drinking fluid the night before. The concept of being well hydrated was a mystery. The world was not accessible and to work in an often hostile physical and social environment involved routine dehydration. That was just my life.

Fast forward 40 years, and I am paying the price of being dehydrated daily for decades. I no longer dehydrate myself. If I do so I feel physically sick. I get severe headaches and my heart feels funny--as in out of rhythm or arrhythmic. I avoid caffeine--it has a profound impact on my heart. One cup of coffee or tea will send my heart racing hence I don't drink either. I drink very little alcohol for that too has a profound impact on my heart. I have also revolutionized my diet. The American Heart Association has specific recommendations and I abide by them. None of this addresses the cocktail of expensive medications I take for hyperlipidemia, high blood pressure, and chronic heart failure. Every time I read the labels on the medication I am reminded of my mortality and the price I have paid to be included in routine social interaction.

Being well hydrated is an exercise in frustration even in an accessible city like Denver. The light rail system stations have few accessible bathrooms. Those that exist are located at major hubs like Union Station. Accessing the few accessible bathrooms in train stations, the library, places of business are never a sure thing. In Union Station downtown about 99% of the time a homeless person or weary traveler is camped out in the one stall I can access. The public library bathrooms are overwhelmingly dominated by homeless and not safe to access. On an average day if I go to downtown it will take me an hour to get there on the train and another hour to find an accessible stall. Finding an accessible toilet is a time consuming day changing effort. The little blue international symbols of access you see everywhere are meaningless. Bathrooms may abound but few are accessible.

Essentially a hydrated paralyzed person's day is dictated by accessing a toilet. Dehydration for me is no longer an option hence much of my time is spent in the quest for an accessible bathroom. The able bodied will say--use a family bathroom. They are huge. Correct. They are big accessible and always locked. Getting the key to the family restroom in Union Station requires a phone call to security and typically a 45 minute wait for a guard to show up. I am not naive. If the bathroom was not locked homeless people would camped out inside. This knowledge does me no good as I wait.

Good things come to those that wait I suppose. The other day I came across a fascinating project: "Around the Toilet". Three years of work went into this project and researchers just released "Around the Toilet: A Research Project Report About What Makes a Safe and Accessible Toilet Space". Link: Prior to reading this report I had never thought accessing a toilet would make me feel included and give me a sense of belonging. The fact is I feel very much excluded every time I use the toilet. I do not know the percentage but the odds of me finding an empty stall I can access is stunningly small. Every day I end up sitting outside a stall waiting for the able-bodied person to get out of the one toilet I can access. After forty plus years of paralysis it finally dawned on me just how wrong and exclusionary this is. I also realized I am far from alone. Other groups encounter barriers accessing toilets. I am not referring to disparities women encounter on a regular basis in the form of a line to use the toilet. This UK based research project main findings included the following:
  • Toilet provision in the UK is currently inadequate for a wide range of people, due to both relational and functional flaws. We need more public toilets, more accessible designs, and different attitudes and ways of understanding the space and our fellow occupants.
  • Many trans and disabled people experience significant difficulties in accessing a safe, usable and comfortable toilet away from home.
  • Toilets labelled as ‘accessible’ are often in fact inaccessible for many disabled users for a range of reasons.
  • There is a lack of toilet research, particularly in the UK, which takes seriously transpeople’s experiences of harassment and violence in binary gendered toilets.
  • There is a need for more all-gender toilet provision (sometimes known as ‘gender neutral’ toilets). This would benefit a range of people including: parents with children of a different gender; those who care for people of a different gender; some disabled people who have a personal assistant of a different gender; and some people whose gender is questioned in the toilet, including some trans and non- binary people (and, to a lesser extent, some cisgender people).
  • A ‘one size fits all’ approach to toilet design doesn’t work – there is no one toilet design to suit all users’ needs. Nevertheless, consideration of all users and moves towards improvement are crucial.
The implications for the lack of accessible toilets is profound. Researchers concluded the following:
  • an inability to leave the house, restricting access to wider environment and community, leaving and losing jobs. In other words, not having access to suitable toilets impacts upon people’s fundamental ability to live their lives.
  • restrictions upon bodily functions, including reducing food and drink and ‘holding on’for long periods of time, all of which can have serious health implications.
  • feeling socially unrecognised, unworthy, and unwelcome, if toilets do not meet your requirements and/or recognise your identity.
I have experienced each and everyone of these findings. For me, the problem of accessing toilets has gotten worse not better because of my heart condition. It is simply bad for my health to not drink fluids and be dehydrated. Indeed, one of the shocking things to me is exactly good I feel now that I am well hydrated. Hydration is a privilege of the able bodied who thoughtlessly access toilets on a regular basis. The implications for the lack of accessible toilets is profound. I have heart disease because I am paralyzed and have spent nearly four decades dehydrated on a nearly daily basis. Sure a compromised autonomic system has done me no favors but if I am reading peer reviewed medical journals correctly researchers emphasize hydration is required for healthy hearts. Moving to Denver, a high arid city at altitude, has only highlighted the need to be well hydrated.

In writing this post I often thought of Branislaw Malinowski who used the phrase the "imponderabelia of every day life" when he did ethnographic research in the Trobriand Islands. Malinowski here was referring to phenomena of importance that cannot be understood from afar or via the written word (arm chair ethnography). To really understand culture it had to be observed on a daily basis. The mundane he concluded could teach us about why we behave as we do. Seemingly unimportant routines, how we care for our bodies, make food, house ourselves etc. can teach us about who we are as humans. The same can be said of the toilet and whether it is or is not accessible to others. Yes, those long periods of waiting to access a toilet have not been wasted. It is a post such as this that makes me realize how lucky I am to have found the field of anthropology. It has helped me understand the world and my place in it.

Wednesday, August 8, 2018

Nail Salon Bigotry Turns into Feel Good Story

Mainstream media outlets routinely butcher stories about disability. I never cease to be amazed how disability based discrimination gets glossed over and turned into a feel good story or what many call inspiration porn. In 2012 video,  comedian Stella Young brilliantly deconstructed inspiration porn. She defined Inspiration porn as follows:

Inspiration porn is an image of a person with a disability, often a kid, doing something completely ordinary--like playing, or talking, or running--carrying a caption like 'your excuse is invalid'... It's there so that non-disabled people can look at us and think 'Well, it could be worse... I could be that person'.

The spring is filled with dehumanizing inspiration porn. The paralyzed young man who uses an exoskeleton to walk across a stage to receive his diploma. The crowd cheers wildly. Stories abound about paralyzed wives, paralyzed moms, paralyzed dads, and people with a disability doing something, anything really, and people fawn all over them as though they are heroes. Stories also abound about non-disabled people doing something nice with a disabled person. Ordinary events like lunch, going to a baseball game, getting in or out of a car, shopping, traveling on a bus or train, etc are turned into inspiring events. In this video age such inspiration porn inevitably ends up on You Tube and major news outlets. They are used as 30 to 60 second clips at the end of a broadcast designed to make non disabled people good about themselves and the world. Comment sections under such stories all gush about how inspired they are.

I have deconstructed many inspiration porn stories on my blog. The reaction is always the same--non disabled people get angry and a hate emails fill my mailbox. Pouring a dose of reality on a supposedly tear jerking story is not the way to become popular. Indeed, I am weary of deconstructing inspiration porn because the negative reaction is swift and immediate. In post a post factual society, one replete with "alternative facts", pointing out that there is nothing real going on in inspiration porn stories is a sure fire way to alienate people. Living up to my moniker bad cripple, today, I cannot let an inspiration porn story go without comment in part because I was taken to task on twitter.

ABC and many other mainstream news outlets had stories about an incident in Michigan. Apparently Angela Peters went to a nail salon to get her nails done. Peters has a disability and it is difficult to hold her hands still. Peters was told by the nail salon that it would be too difficult to do her nails and she was refused service. An employ of a nearby Walmart, Ebony Harris, who knew Peters decided to help her. Together, Harris and Peters picked out a colorful nail polish, went to a nearby Subway seating area. There Harris set up a DIY nail set up and did Peters nails. Tasia Smith who works at Subway saw what was going on and took photographs and of Harris doing Peters nails. An essential component of inspiration porn is the non disabled person must be humble. Harris told reporters that she gave up her break to do Peters nails. Harris simply wanted to make the day special for Peters and did not want her day to be ruined. While doing Peters nails Peters apologized for her hand movements. In reply, Harris stated she was nervous too because she did not want to mess up Peters nails. Smith who took the photographs posted them on Facebook and the images went viral. Smith wrote "She did great, barely moved & was just so sweet. It's an absolute shame that they denied her for something so little". Harris has been predictably humble telling various news outlets, "I love it and it hit my soul in a very deep place. It makes me feel good, but its very overwhelming".  Walmart seized on this opportunity and issued a press release stating:

Ebony simply wanted to make sure our customer's day was special, and that's the kind of person she is--someone with a wonderful attitude who goes the extra mile each day to make those around her feel important. We're not surprised at her act of kindness. Her service to customers defines the spirit of Walmart and we couldn't be more proud. 

Another key component of inspiration porn is for the disabled person to be utterly silent or as humble as the non disabled "helper" being lauded. Thus news outlets were quick to point out that Harris and Peters goal was to raise awareness for people with disabilities. They did not want the nail salon to be punished or others to boycott the salon. Peters told ABC news:

I forgive the nail people for not doing my nails. When people do us wrong we must forgive, if not we harbor bitterness. I don't want anyone fired, I just want to educate people that people with different challenges like being in a wheelchair, we can have our own business and get our nails done like anyone else. 

Harris agreed with Peters and told ABC news: "We want people to look at the positive side of the story, that there are a lot of good people out there". 

The above story is an absolute text book example of inspiration porn. The reality of what actually took place is not inspiring. The nail salon flagrantly violated the law. Peters could and should have filed a formal complaint under the Americans with Disabilities Act (ADA) with the Department of Justice. Peters civil rights were violated. The fact Walmart used its public relations department to disseminate the story to all the major news outlets is not mentioned. The fact people with a disability are routinely turned away from nail salons, hotels, motels, airlines, restaurants, museums, mass transit systems, housing, schools, universities, and denied services in every state of the nation is also not mentioned. The word ableism remains unknown for this reason. Peters wants others to be educated and enlightened about disability. Good luck with that. All the education in the world will not eliminate disability based bigotry. Education was not the reason 40 years of progressive legislation designed to empower people was passed into law. Civil disobedience and protests that shamed others led law makers to write laws that protect the rights of people with a disability. When I read Peters comments about forgiveness and bitterness I was repulsed. As a person with a disability if I have learned one thing it is that being nice and being quick to forgive others will insure our constructed environment will remain grossly inaccessible now and forever. As Stella Young noted in her talk about inspiration porn all the longing looks in the world will not make a staircase go away and get an elevator installed to provide equal access.

Equal access. Equal rights. This is the lost story. As I see it we have moved into a new era of disability rights. Those of rabble rousing age grew up in post ADA America. As people with a disability came of age they knew lots of laws existed regarding disability. Most people agreed the laws about access and equal rights should be adhered to. Out right bigotry of the sort I experienced has morphed into a formulaic politeness. Heads nod that any and all "reasonable accommodations" should be made. The problem is those accommodations can take years to get. Need a note taker in your class? Fill out these forms, see a physician to see if you qualify, talk to the ADA  coordinator, disability services, and your professor, and hopefully by the end of the semester a note taker will be found. Worse, virtually no people with a disability are in positions of power hence a "reasonable accommodation" will be decided by a person that is almost certainly non disabled and most likely knows nothing about disability. Add in "reasonable accommodations" are resented and seen as some sort of scam and an underlying hostility exists in most institutions. Here in Colorado for example I have worn out the rug to my physician office with all the forms required by the state. Such forms must also be filled out to perfection. No blue ink. Ink must be black. Form rejected. None of this includes the time and labor involved. For example, I was in the Department of Motor Vehicles for over 5 hours getting license plates. I get to do this all over again to get a handicapped placard.

After thinking about the story above, I have concluded to be valued as a human being one must be able in the extreme. By able I mean young, active, absent any sort of disability, fit (not obese), employed, and preferably attractive, white and heterosexual. Based on my drive across the nation and the hatred being spewed out by the GOP on a daily basis, I can only conclude intersectionality is bad. Difference is feared and I sure as hell am different. As a society we are not merely regressing but taking giant strides backwards. Unlike Peters who is eagerly willing to forgive others who violate her civil rights, I feel like am a throwback to a time gone by. I stand up for my civil rights. When people violate my rights I get angry. I do not meekly do as I am told. I am willing to point out disability based injustice. I am willing to upset others. None of this is easy. As noted above, I live up to my moniker.