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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.

Tuesday, August 7, 2018

A Wheelchair Can Be Too Light

Last weekend I went for a drive with two friends. I had been told repeatedly that the drive to the Mount Evans Summit was nothing short of spectacular. The Mount Evans road is certainly not for the faint of heart--it is the highest paved road in North America. There are no guard rails and the road is very narrow with multiple hair pin turns. I would venture to say it is the most challenging road I have ever driven. The best section of the road and most challenging is the 28 mile segment from Idaho Springs to just below the summit of Mount Evans. In that distance one goes from 7,540 feet to 14,130 feet. The views from the summit are nothing short of breathtaking. According to the National Park Service, traveling to the Mount Evans summit is akin to driving through Canada to Nome, Alaska. Every 1,000 feet gained in the mountains is the equivalent to traveling 600 miles in latitude.

I did not take any photographs on the drive. The drive required 100% concentration and once pass Summit Lake there is virtually no safe place to pull over. When we left Denver it was warm and sunny--mid to upper 80s. In the West however weather can change fast. In addition, we were going to gain 7,000 feet in elevation. By the time we got to the Mount Evans road clouds had moved in and it was raining. The temperatures dropped rapidly--more than the average drop of 3.5 to 5 f. per 1,000 feet of elevation gained. Half way up to the summit it was 42 f. and windy--a drop of over 40 f. At the summit parking lot the temperature was 37 f. with sustained wind gusts at 40 to 50 mph. The wind chill made it feel like it was in the low teens. I was thrilled! I love the cold. I wanted to explore as I knew the hike to the summit itself was wheelchair accessible and a mere 1/4 mile. We never got out of the parking lot. Once in my wheelchair the wind was so strong it was almost impossible for me to independently control my wheelchair. I have felt strong wind gusts before. Sitting in my new light weight wheelchair is almost like being a sail. To date, this has been great fun or great work. The fun is allowing the wind to move me at break new speeds. The work is going against the wind. Wind in a wheelchair as light as mine is major variable and something I have never thought about.

The powerful wind at the top of Mount Evans moved me in ways I have never felt before. I was on the verge of being completely out of control and unable to stop my wheelchair. At over 14,000 ft. I was winded from transferring from the car to my wheelchair and moving across a small parking lot. I was also chilled to the bone. In a visceral way Mother Nature demonstrated her power and my hubris. I was not prepared for the weather or wind. In more ways than one I was blown away. From the summit one can see most of the Continental Divide in Colorado. One can also see Longs Peak, Denver, Pikes Peak, and Mount Bierstadt. The drive and summit views were incredible experiences. Better yet I learned a basic fact without injury. My wheelchair is too light in sustained high winds. I never thought I would live long enough to write that statement. I look forward to going back on a day when I am well prepared for the weather and altitude. It looks like I will need to dust off my ancient back up wheelchair and refurbish it if I am going to hike around the top of Mount Evans. Simply put, I need a far heavier wheelchair if I am going to make the short hike to the summit. Amazing.

Monday, August 6, 2018

Driving Across the Country

I drove from Denver to New York and back in my new car. In less than a week I drove a little over four thousand miles. I needed to bond with my car. We are truly bonded. Getting my wheelchair in and out is a snap and my little fuel sipper averaged 36 mpg on the trip.

Random thoughts as I drove across the heartland without a satellite radio meaning I listened to a lot of bad country music, right wing talk radio and even worse religious talk.

Billboard in Ohio: "When you die you will meet God. You have been warned". 

Talk radio in Iowa: "Elizabeth Warren is a radical whose socialist agenda is designed to destroy all that America stands for. She is amassing hundreds of millions of dollars to run for president. We can't let that happen. Socialism is the enemy of this nation. She is more dangerous and leftist than Bernie Sanders. Trump and Pence will make America great again"

Talk radio in Nebraska: "Democrats want to undermine our faith and belief in God. Religion is under attack and the leftist Democratic Party wants heathens to pour into our country from Mexico, assault our women, and destroy our churches. We are under siege"

Laura Ingraham: Of course I know who Ingraham is. I have read many of her controversial statements and know she is a so called ardent nationalist who is a vigorous supporter of Trump. I also know she has a radio program. It is one thing to know these facts and another to listen to her spew hatred and disinformation on her radio show. I was shocked by her lies and the venom directed at gay people and immigrants. After 30 minutes I was so flabbergasted and disturbed I changed the station. Bad music or silence was preferable.

Add for an unnamed political candidate, Indiana: "Candidate is endorsed by the NRA and is a gun owner. Candidate will protect the rights of the unborn and will broker no assaults on religious freedom. The candidate served honorably in the airforce. He is a leader of God faring men. If you love this country and want to defeat radical democrats this is our man."

Gas station in Ohio. I am being stared at as I pump gas by two men in a 1960s era pick up truck covered in mud. They have a conversation about how they now let anyone drive. They appear to be offended by my existence and the fact I am driving a Honda. Clearly unimpressed with me and my driving ability they discuss how to get to their destination without getting on the interstate because they let people like me drive.

Checking in at a cheap motel: Me: "Do you have a wheelchair accessible room". Desk clerk: Who are you with? Where is your caretaker?" Me: "Do you have a wheelchair accessible room?" Desk Clerk, confused and a little annoyed: "I think so". After looking at a computer screen for a long time, looking beyond me and outside as though he is expecting a caretaker to arrive finally answers yes.

Cheap motels: Wheelchair accessible at national motel chains is iffy at best. Days Inn, Baymont Inn, Red Roof Inn, Super 8, Microtel, etc. accessible rooms range from very accessible to not accessible at all. I had an accessible room with a roll in shower that had a step to enter the shower. All rooms I stayed in did not have the bathroom towels, iron, ice bucket, hanger rod etc. were within reach. The motels pools had wheelchair lifts. 50% of the lifts were broken.  

Thanks to ADAPT: In one of ADAPTs first national efforts in the early 1980s was to convince all McDonalds to be accessible. The initial reaction from the McDonalds corporation was predictably negative. Fast forward to the present day and McDonalds food may be terrible but I knew with certainty any and all McDonalds bathrooms were accessible.

Local Museums in Iowa: Two little museums in Iowa were an oasis of fun. The Iowa Museum of Aviation is a wonderful small museum that displays historic aircraft. The museum's collection concerns Iowa aviation and its archive is first rate. The Bob Feller museum was a hoot. Feller grew up in rural Van Meter, Iowa and found himself as a 17 heard old playing professional baseball. He threw a fast ball over 100mph. I cannot imagine the culture shock he experienced leaving Iowa for New York and forging a Hall of Fame career with the Yankees.

Nebraska and Colorado. The speed limit is 75 mph. I was content to drive in the right lane at 80mph. Cars were blowing by me at over 100mph.

All of middle America. Giant pick up trucks abound. With gas at $3 a gallon what does it cost to fill up these beasts.

My drive across America was educational. I learned in a visceral way why Trump was elected. There are millions of angry conservative, white, Christian, rural Americans who are afraid of change. The white bubble in which they live is changing. This change is perceived as an attack on their lives. In Iowa I heard a lot about hog and soy bean prices but thrown in with such news was a healthy dose of fear. Anything and everything outside the United States is suspect. Trump has tapped into middle American fear with simple statements--the most famous of which is "make America great again". This is meaningless rhetoric to me but to rural residents in middle America and conservative Christians this is exactly what they want to hear. There is no need for education. No need to Google and learn. Indeed, there is an anti intellectualism that is deeply disturbing. The answers are obvious and need no explanation.  I felt this. My kind are not wanted. Oh yes conservative Christians love to pray for me but they deeply resent special education, accessible rooms, pool wheelchair lifts, accessible buses etc. I am as threatening symbolically as any non white person. As such, I was referred to as "you people" daily at gas stations and motels across the nation. I was openly stated at every time I put gas in my car. More than ever, I am aware I live in a little bubble here in Denver.  I am equally aware we have a national problem fostered by Trump. We have elected a demagogue who has all the answers and any person or organization that defies his pronouncements are an "enemy of the people"--his words not mine. These are truly troubled times.

Monday, July 23, 2018

Out and About and Routine Harassment

I have lived in Denver over a year. This is the first city I have lived in that is truly accessible. I take the train and bus everywhere I go. Before I arrived, I sold my car because there was no pressing need for a vehicle. I was also concerned about driving post heart attack. For a few months after my heart attack I was continually short of breathe. I experienced lightheadedness. I had pulmonary edema. My legs were the size of tree trunks. Going down the hallway where I live left me breathless. I was not going to drive a car and put myself and others at risk. I felt it prudent wait a year before I would evaluate the need for a car. Well, a year has passed and I am asymptomatic. I am no longer short of breath. I have some edema but that is related to the summer heat and routine paralyzed life. I am never lightheaded. The only bodily change I have noted is that I am increasingly sensitive to heat and hills, whether pushing my wheelchair or riding my bike, sap my strength quickly. If this is what life is like when one's heart is failing, I will take it any day of the week. Indeed, the only time I think about my heart is when I take medication in the morning and evening.

Without a car, when I shop I am rarely alone. By shop, I mean the big hauls of groceries and routine errands to locations where the rail or bus does not go. Now with a new car, I am free to go out even when it is very hot. The degree of freedom a car awards a person is nothing short of amazing. Even in a city with accessible mass transit, having a car is a real luxury. I have not driven in almost two years and the car has energized me. In a car I am on equal footing with bipeds. There is no difference between me and any other driver. In the short period of time I have been driving and interacting alone, I have been forcibly reminded by others my existence is way out of the norm. In just the last week I have had many rude and insulting remarks directed at me. I am free game to others. A random sampling of unwanted comments or experiences I have received in the last ten days:

"Where is your caretaker? You can't be allowed out by yourself".

"You can drive? That does not seem safe."

"Where is your back pack? All wheelchairs have back packs for groceries". 

"Wow, getting in and out of a car looks like a time consuming process. Thank God I am not wheelchair bound".

At Costco, three people grab my cart and push it away from me for no apparent reason. A stranger informed me an employee of Costco should be pushing the cart for me. Apparently I was showing off and acting like I was independent.

Mothers grab their child's hand and state "Watch out for the wheelchair".

At the gas station, an attendant stares at me as I take my wheelchair out of the car. He appears mentally altered and is cursing under his breath about what a "stupid mother fucker" I am.

Welcome to Donald Trump's American society. Ignorance, bigotry and hatred have been normalized. Viral videos abound of racist behavior--white people feel free and justified to call the police when black people have the nerve to simply exist. This week I have been forcefully confronted with the reality that I too am subjected to taunts and bigotry. My crime? Being out and about alone. The above comments are predicated on being alone. When I am alone, I am a target. Independence for crippled people comes with a heavy price tag. Hence, I am reminded yet again that I am the other. Strangers do not see me as a human being but rather a wheelchair--an inanimate object that is deeply stigmatized.  It is though my existence takes place in circus sideshow replete with distorting mirrors. When I am subjected to unwanted comments it is though people see everything but me and rely on figments of their imagination to extrapolate what my life is like. The irony here is they have failed to use their imagination. If there is one thing I truly embrace about life with a disability it is imagining what is possible. And believe me, there is a world of possibilities--one just needs to be creative enough to imagine a good life. Of course this imagination is dependent upon adequate social, societal, and economic support. And this gets me back to Donald Trump and the GOP that seems hell bent on stripping away any semblance of social support for the poor, disabled, elderly and all others who are vulnerable.  Last week was a forceful reminder where I stand in American society--stigmatized and unwanted. Not to worry though. I remain undaunted as do many of my crippled peers and this alone makes my heart soar with pride.

Friday, July 13, 2018

Ticket Seller's Ignorance

I love baseball in large part because the game saved my sanity as a morbidly ill child. I seen much of my youth on the pediatric neurological ward at Columbia's renown Babies Hospital. Back then, children were not allowed act like kids--our job was to get well. Rigid rules abounded. Rules my parents broke on a regular basis. One of those rules was permission to use a small electronic radio. I listened to the New York Mets--my favorite team then and now. In my opinion, baseball radio broadcasts are the best way to enjoy a game. A close second is to attend a baseball game. This is exactly what I did yesterday. I went to see the Colorado Rockies play in the afternoon. I ordered my tickets online and was directed to the will call window to pick them up. This routine interaction did not go well.

Me: "Last name Peace".

Agent: "Who bought the tickets for you?"

Me: "I did".

Agent: "You can do that?"

Me: "Yes, I bought the tickets. Last name Peace".

Agent: "Where is your caretaker?"

Me: "Last name Peace. One ticket".

Agent: "How did you get here?"

Me: "Last name Peace".

Agent: "Who brought you here?"

Me: "Last name Peace. Please, I want my ticket". 

Agent: "You don't have to be rude. I am trying to help you".

Me: "Last name Peace". 

I then slide my driver's license in the slot along with credit card I used. The ticket is printed out.

Agent: "Your ticket is not handicapped!" 

Me: "I know. May I please have my ticket".

Agent: "You are supposed to be in handicapped parking. You are not allowed to sit anywhere else".

Me: "I bought a $9 general admission ticket. I can sit anywhere I want".

Agent: "Well, can I get someone to help you. We have wheelchairs available. We have people to push you where you want to go". 

Me: "May I please have my ticket".  

Agent: "Are you sure you are alone? You really need a caretaker". 

Me: "May I please have my ticket". 

Agent: "How will you get home after the game?"

Me: "May I please have my ticket".

Agent: "You should not be out by yourself".

Obviously perplexed I am not answering his questions at long last I get my ticket. There is no "enjoy the game" statement--just a stoney silence and annoyed look. Such exchanges are not the norm; however, they do occur on a regular basis. One variable is constant: such exchanges always take place when I am alone. As I often joke with friends, we cripples only travel alone or in pairs. We cannot travel in more than pairs because buses and trains routinely only have two places for us to sit. When alone, we are free game. Nothing about our lives is private. Bipeds think they are wildly creative about solving our problems that do not exist and freely offer help that is not needed. Bipeds are also curious beings. No question is too intrusive and we cripples must at all times be happy to answer any and all questions like "Where is your caretaker". On my train ride home after the game I wondered about the ticket agent. What was he taught about disability? What did he absorb growing up? It is evident to me that what people absorb and are taught about disability remains wildly inaccurate. The over riding lesson learned nearly 30 years post ADA is unchanged: crippled lives are less valuable. We are the worst case scenario for how life can go wrong. Access is provided as an act of charity, not equal rights. This is exactly why disability rights are a stealth civil rights movement. What could I have done yesterday to educate the ticket agent? Nothing. And the ticket agent while woefully ignorant is not unusual. Ignorance is the norm when it comes to disability. I am subjected to ignorance on a daily basis. Worse, in the current political and social meleiu disability rights are under assault by Trump and the GOP. Medicaid is being cut and access to health care, housing, mass transit, and employment are exceedingly difficult. Disability rights and more generally the rights of any person who is somehow different is perceived to be an affront. I am no snow flake. I am one of millions of people in this nation living and thriving with a disability. Some days I find this defeating but today I am energized. Good people still exist--even some bipeds get it and are allies of disability rights. People like Wade Blank who along with 19 disabled people, the Gang of 19, here in Denver started a successful nationwide movement to make the mass transit system accessible. Without that effort 40 years ago, I would not have been able to take the train to a baseball game and be confronted with impressive ignorance.

Thursday, June 28, 2018

New Wheelchair Enthusiasm

Most people are familiar with new car enthusiasm. New car enthusiasm means the brand new car gets thoroughly cleaned on a regular basis. People experiencing new car enthusiasm often chose to park a bit further away from the entrance to stores in the hope that inevitable door nicks can be avoided. For some, new car enthusiasm lasts a few years and for others a few weeks or even days. This year, I have learned a similar phenomenon exists with new wheelchairs. I have a serious case of new wheelchair enthusiasm. My new wheelchair enthusiasm remains solidly in place six months into ownership. My wheelchair is not a little bit clean--it is spotlessly clean. Think car dealership show room clean--my wheelchair does not get waxed liked a car but I clean it daily. I clean the tires each and every time I leave my apartment. I wipe down the frame with a cleaning cloth several times a week. I clean the front wheels twice a week. I clean the upholstery thoroughly every weekend. Once a week I clean the spokes, rear hubs, and rims. Every weekend I get out of my wheelchair and check every screw to insure they are tight. I fold down the back and lubricate the quick release axles. I diligently remove hair that inevitably collects in the front wheel hubs. The level of care my new wheelchair receives is over the top. In fact, the most common question people now ask me-"Is that a band new wheelchair?". I do not foresee new wheelchair enthusiasm changing any time soon.

Using a modern wheelchair is an interesting experience. My old wheelchair was 30 years behind the times. It was state of the art circa 1985. When compared with contemporary wheelchairs it looked hopelessly antiquated. This did not bother me one iota. I have a passionate dislike for the wheelchair industry and successfully avoided thinking about new wheelchairs for over three decades. The technology associated with my old wheelchair may have been antiquated but it was technology that worked and virtually never broke down. My old wheelchair could take a beating and was very simple to repair. Modern wheelchairs are not so rugged. This is the main worry I have with my new wheelchair. It is a modern marvel but I have no idea how long it will last. I have modest expectations in this regard. I am particularly skeptical with regard to the carbon fiber frame--a costly upgrade. No doubt the frame is strong and rigid despite the fact the back upright folds down. The rear rigidizing bar, a smart design feature, makes the wheelchair feel solid. The rear wheels, made by spinergy, another costly upgrade, will not last long. The tires already need to be replaced and a few spokes are slightly bent. The back upholstery is not holding up well. It will need to be replaced in a few months at the most. The seat upholstery has a tear and will also need to be replaced soon. I had expected the upholstery to last at least a year and am deeply disappointed. If necessary, replacing the upholstery every six months will be costly. On the positive ledger, the bearings, front and rear, feel new. I sense no deterioration in performance. The front wheels appear to have a long life ahead of them. The front casters which take a real beating are holding up well.

While I appreciate my new wheelchair I do not love it like my old one. My old wheelchair had a feel and soul. After 30 years, it was an integral part of me. I knew what it felt like in frigid temperatures and excessive heat. It had a feel modern wheelchairs simply do not have. I am quite comfortable in my new wheelchair. It is perfect for my urban life style and aging body. It is significantly easier to push. When navigating an airport or train terminal I go at warp speed passing bipeds continuously. Yet I have no expectation my wheelchair will last more than a few years. The parts are prohibitively expensive. A set of upholstery for the back and seat are well over $500 when combined. Scissor brakes are about $300. Good quality rear wheels are over $500. All these parts are showing age in six months and will need to be replaced. High performance it seems to come at a high cost.

My new wheelchair might need to be replaced within the next few years years. I think about this too much and worry. Given that I plan on flying nationally and internationally later this year there is no doubt I need a second wheelchair in case my current wheelchair has a catastrophic failure or an airline destroys it. Modern wheelchairs in my estimation are not indestructible nor are they designed to last more than a decade. In Denver I see a lot of paralyzed people--especially on the light rail and bus system. The go to wheelchair in this area are TiLite manual wheelchairs. I would estimate 9 of 10 manual wheelchairs I see others using are TiLite. I suspect much of this has to do with Craig Rehabilitation Hospital. Craig is the overwhelmingly dominate rehabilitation center in the area. At a recent Rockies baseball game I saw a contingent of about ten newly paralyzed people--every guy, and they were all men, were using TiLites. This is a decent wheelchair but has a short life. It is the perfect starter wheelchair for a newly paralyzed person that knows nothing about disability. After two years of rigorous use TiLite wheelchairs are worn out. Screws and bolts fall off, the folding back mechanism becomes wobbly, the wheels wear out and the frame becomes loose and is no longer rigid. By year five, most TiLite wheelchairs in my experience must be replaced.

What the future holds for my wheelchair is unknown. What I do know is the warranty will never be honored. In previous posts I detailed the ridiculous owners manual. Among the many violations I have committed include going out in direct sunlight. I have showered and did not have my non existent care taker remove the wheelchair from the bathroom to avoid the humid environment. I have gone outside in the rain. I have gone through deep puddles of water and, gasp, I have been outside in the snow. I have even hiked on gravel and dirt trails. All these outrageous and ordinary acts void the warranty. This has made great fodder for joking with friends and my son. At a certain level this is quite funny and mocking the owners manual is entertaining. However, when I seriously think about my wheelchair I do not think the manual is funny at all. The owners manual assumes incompetence and complete and utter dependency upon non disabled others. The owners manual assumes the wheelchair user will use the wheelchair under ideal weather conditions and only venture outside on rare occasions. This is a decades old mentality. What bothers me the most is the stark dichotomy between design and expected use. The design of my wheelchair is empowering. It has served me well in its short life. There is no doubt seasoned wheelchair users were consulted and their input went in the end product. There are multiple little things that make my wheelchair a pleasure to use and maintain. Yet I remain troubled. Maintaining my wheelchair might be costly. Routine parts that are destined to wear out are costly and at this initial stage it does not appear will last long. Replacing upholstery yearly is a reasonable expectation. Being required to do so twice a year is unreasonable in my estimation. This is particularly the case given the wheelchair and upholstery has not as yet been subjected to rigorous use.

For now, I remain impressed with my wheelchair. It has a multitude of advantages over my old wheelchair. It is lighter. It is easier to push. The back folds down and it takes up much less space in a car. I love the fact it came with a little tool kit that fits easily in a bag when traveling. The turning radius is amazing and its footprint is substantially less. About the only thing I dislike is the fact it has no heart. Perhaps that takes time. I only hope it will last long enough for me to fall in love.

Wednesday, May 30, 2018

The Failure of Disability Rights Movement

I have been active in and around the disability rights movement since 1978. I was paralyzed at age 18--a few months before I was to attend college. I was hopelessly naive. I knew nothing about disability. I knew absolutely nothing about disability rights. In fact, the idea of disability rights barely existed and was far from mainstream thought. In the fours years I was an undergraduate at Hosftra University in Hempstead, New York I learned much about my paralyzed body, the history of disability, disability rights, and the stigma associated with disability. Unbeknownst to me, I attended the perfect university. Hofstra had a sterling reputation for wheelchair access and had a significant commitment to providing reasonable accommodations to all students who identified as disabled. The campus was the perfect safe haven for me. I could explore a hostile world and return to a safe environment. I quickly joined PHED (Program for the Higher Education of the Handicapped) and the wheelchair basketball team. The real learning, the life-changing knowledge I acquired, did not take place in the various classrooms I went to. The real education took place in the dorms where veteran cripples explained how the world worked. Those four years were hard. The transformation from a privileged white kid to the reality of life as a paralyzed man was harsh in the extreme. My reality remains harsh as it does for all those who claim disability as a central part of their identity. 

Harsh is the perfect word for 2017 and 2018 just as it was back in 1978. To have a disability in this nation is harsh. We have a president that is flagrantly racist and ableist. Recently, the official White House website posted a nearly 500 word "article" "What You Need to Know About the Violent Animals of MS-13". Link:  The word animal was used multiple times to describe MS-13 gang members. Yet again, the President has disgraced himself, the office of the presidency, and the American people. Yes, harsh describes not only my life but the lives of all people that are not white, heterosexual, and have a conventionally typical body.  Difference today is a threat--any difference. I have spent much time thinking how to survive the next few years living in a nation that has embraced hatred and ignorance--much of which is generated by the White House. My dilemma is basic: I do not know what to do. I am not sure others know what to do as well. We are truly in unchartered waters and at a unique and dangerous time in American history. 

Recently read a thought-provoking essay by Leah Lakshmi Piepzna-Samarasinha at Truthout entitled "To Survive the Trumpocalypse, We Need Wild Disability Justice Dreams". Link: This essay energized and depressed me. I was energized because of passages such as this: 

if we're going to survive the Trumpocalypse and make the new world emerge, our work needs to be cripped the fuck out. Our work needs to center disability justice and the activists at the heart of it who have reclaimed "crip" or "krip" as a positive identity, where being sick, disabled, mad, neurodivergent/Autistic and/or Deaf is at the heart of our radicalism.

I was depressed to read the author was:

Sick of single-issue, casually racist white-dominated disability rights movements on the one hand, and of non-disabled Black and Brown movements forever "forgetting" about disability on the other, they decided to create some kind of luscious, juicy movement that would be like what environmental justice was to environmental rights, but in a disability context. 

In recent years I have read similar passages by disability rights activists and scholars. This comment is spot on. The disability rights movement was spurred by white men such as Ed Roberts. Single issues abounded. I readily acknowledge I was and remain a member of the chrome police--a funny term coined by Deaf people who had no interest in wheelchair access that I fought hard for. I get it--the iconic blue wheelchair logo means nothing to deaf people. The fact is the disability rights movement is hopelessly splintered and centered around a medical model of disability. However, I can assure you I never felt white able-bodied privilege when I was an EPVA bus buddy back in the early 1980s. I was spit on by passengers and cursed out by drivers for having the audacity to want to use mass transportation. At least once a year a stranger will comment that death is better than a life with a disability. Segregation and stigma remains rampant. The color of one's skin or gender is meaningless to ableist bigots. 

When I read the above quote I wondered if my time has come and gone. If so, that's fine with me. Let me merely note that being left behind by young disability rights activists hurts. To be characterized as interested in a "single issue" and deemed "casually racist" is counter-productive. I have given my heart and soul to the disability rights movement. I think I still have a lot to offer but if my presence is unwanted so be it. 

I get the future power brokers of the disability rights movement does not rest with white disabled and nondisabled men as it once did (and this was a significant problem). The future as I see it is dominated by females and others who are not white, neurotypical, nor gender normative (here moving away from a gender binary is to the benefit of all). This change excites me beyond imagination. I embrace Sins Invalid, the Harriet Tubman Collective as well as those who are neurodivergent and mad. I whole heartedly agree with the author about disability social justice:

Disability justice means people with disabilities taking leadership positions, and everything that means when we show up as our whole selves, including thrown-out backs or broken wheelchairs making every day a work-from-home day, having a panic attack at the rally, or needing to empty an ostomy bag in the middle of a meeting. It means things moving slowly and being led by people even the most social-justice-minded abled folks stare at. And what holds many social justice abled folks back from really going there is that our work may look like what many abled people have been taught to think of as "failure." It's so easy to look at a list of disability justice principles and nod your head. But the real deal is messy and beautiful -- as messy and beautiful and real as our sick, disabled, Deaf and crazy body/minds. Disability justice, when it's really happening, is too messy and wild to really fit into traditional movement and nonprofit-industrial complex structures, because our bodies and minds have always been too wild to fit in those structures.
This truly resonates as I know I have never been nor will I ever be the image people have in mind when they think college professor or writer. This sentiment is forcefully brought home every time someone asks me if I can read. Stigma stubbornly clings to all those with a visible disability. There is no hiding my wheelchair. My"needs" are ever so special and when the social veneer of acceptance is wiped away deeply resented. When I show up at academic meetings or university campuses I am met with rolling eyes, stony silence, and blank stares. When I ask about accommodations for disabled faculty I might as well be asking when is the next shuttle to the moon. The assumption here is no faculty member could possibly be disabled. No speaker could possibly need a ramp to access a stage. I am told "Of course the meeting is accessible". Yet no one knows where the bathroom is located, where the food set out is totally inaccessible, and the accessible entrance is in an obscure location, and the after meeting decompression gathering held in an inaccessible location. I guess what I am saying is that I am tired of being left behind and excluded. Long ago, I was excluded from accessing mass transit. Today I am excluded from attending academic meetings because they are too costly for independent scholars to attend (independent here means under-employed). My presence on university campuses is less welcoming today than it was when I left for college. I suppose I must just accept Lenny Davis observation that normal and abnormal are created by a certain kind of society. In American society I fit squarely into the abnormal category--something I have railed against for over 40 years. Today, it feels like I will never escape abnormality. Worse, I doubt I will ever be normal or ordinary. That is something I once dreamed of and will not live to see. 

Monday, May 21, 2018

Sometimes Paralysis Sucks

Yesterday was unpleasant and uncomfortable. Like many people who survive and thrive with paralysis, I have multiple secondary complications associated with a severely damaged spinal cord. I have a long history of skin break-downs. Indeed, I had one wound that almost ended my life in 2010. Within the last year, I have developed a serious heart condition and take what seems to me to be far too much medication. Every time I organize these medications it is sobering to read "take daily for chronic heart failure" or "for pulmonary edema due to chronic heart failure" or take one tablet for "hyperlipidemia". When I read this I am all too aware of my mortality. I am also aware that heart failure is common among people who have lived decades after a spinal cord injury. For me, living for decades on the edge of dehydration because bathrooms are rarely accessible has taken its toll. In short, like millions of others, I am living with chronic heart failure. But here I digress.

Yesterday was bad because I was cold. I was not cold in the typical way the average human with a functioning spinal cord gets cold. My autonomic system is dysfunctional. As a result my ability to feel the cold is seriously impaired. Unlike most people with a spinal cord injury, I love the cold and hate the heat. The cold and rigorous exercise makes my spasticity go away. My legs which typically have significant tone turn to jelly for hours after I am done skiing, biking, or kayaking. Yet I also experience another kind of cold unrelated the temperature outside. I can feel bone-chilling cold for hours. Many paralyzed people know this feeling. The cold I feel is hard to explain. If we humans have an internal thermostat, mine is dysfunctional. Yesterday I felt bone-chillingly cold for hours on end. The cold I felt was exhausting. Thankfully what I experienced yesterday was uncommon. I know that at some point my internal thermostat will return to what passes for normal. I also know I am very lucky. I have never experienced autonomic dysreflexia a potentially fatal condition associated with high level of spinal cord injury (generally above T-6). I simply do not get urinary tract infections and do not have kidney disease or bladder issues. I do not have a long arduous bowel program. The circulation in my legs is quite good thanks to excellent vascularization. The neuropathic pain I experience is not overwhelming and does not affect my life-style. In short, the serious complications associated with paralysis are relatively minor. With an acute awareness of my body combined with decades of bodily management free of well-meaning but ignorant physicians who know little about living with paralysis I am in good shape. Yes, I am one lucky paralyzed man. That is my mantra after bad days--and yesterday was bad.

Despite my bad day, I still marvel at my body. It has been through the wringer. I often wonder how have I survived into middle age. I never thought I would turn 21 years of age much less settle comfortably into my 50s. I survived three massive spinal cord surgeries as a teenager, dozens of spinal taps and countless medical procedures as a child, a stage four wound on my hip, and a heart attack.  This cavalcade of medical woes has not diminished the feeling that my body has exceeded my wildest expectations. Whereas typical others see pathology and the medical industrial complex seeks to cure me, I feel victory. I have survived and lived and loved and worked and enjoy each and every minute of the day. More than many, I know life is a gift--one that is all too short. I know people don't want to know my reality. They take one glance at me and know everything. Assumptions are made, expectations are non-existent. My competence is open to question. Can I cross the street by myself? Can I get in and out of a car and drive? Can I have sex? The bar is set very low when one uses a wheelchair. My visceral experience living in a dysfunctional body is dismissed by most. When I point out that my body has adapted marvelously this observation is instantly dismissed by healthcare professionals and society alike. When I express delight about what I can do, my efforts are reduced to nothing more than a feel-good moment or the ridiculous notion I have overcome my disability. More than once when I expressed pride in what my body can do I have been tapped on the head like a child. Some of my academic peers, especially those in bioethics, are decidedly uncomfortable in my presence. Utilitarian philosophers of the Peter Singer type think all things considered it might be better off if I were dead. Those in favor of assisted suicide find my opposition tawdry if not somehow intellectually unbalanced. I am told repeatedly not all people are capable of living with a disability. Such ableist beliefs are rampant in the academy. If you doubt me read the insightful Academic Ableism. In response to such ableism I am supposed to have a good-natured philosophical debate? I am not Harriet McBryde Johnson who famously and politely debated Peter Singer at Princeton University. Sorry but no. I am too old and crusty to engage in this sort of collegial exchange. I can be polite but there is a line I refuse to cross. I simply refuse to be denigrated and judged. I decry the human penchant for snap decisions and reliance on worn out stereotypes.

Wednesday, May 2, 2018

David Goodall: Dying in Support of a Media Campaign

In the last 48 hours dozens if not hundreds of newspaper articles have superficially covered the pending death via euthanasia of David Goodall, an 104 year-old Australian scientist. Described as Australia's oldest scientist, Goodall wants to die. To do so, he is going to travel 8,000 miles to Switzerland because assisted suicide laws in Australia are limited to those who are terminally ill. Exit International, a euthanasia advocacy group, has created a Go Fund Me page on behalf of Goodall. The Exit International website bemoans the fact Goodall cannot end his life in Australia stating it is unjust one of the nation's "oldest and most prominent citizens should be forced to travel to the other side of the world to die with dignity. A peaceful, dignified death is the entitlement of all who want it. And a person should not be forced to leave home to achieve it"."

Goodall himself has been repeatedly quoted in news reports. The most commonly used quotes are as follows:

I greatly regret having reached that age. I'm not happy. I want to die. It's not sad particularly. What is sad is if one is prevented. 

My feeling is that an old person like myself should have full citizenship rights including the right of assisted suicide. 

To be perfectly clear: Goodall is not objective nor am I. Goodall has been a member of Exit International for over two decades. He is good friends with the controversial founder of Exit International, Philip Nitschk. In sharp contrast to Goodall, I am opposed to assisted suicide. I am also a Board Member of Not Dead Yet, a grass-roots organization opposed to assisted suicide and euthanasia. The difference between myself and Goodall is that I am above board with my association with Not Dead Yet and views on end of life. Many newspaper articles fail to mention Goodall is a long time member of Exit International and advocate for assisted suicide and euthanasia. Almost all newspaper articles fail to discuss the fact the Goodall's desire to die is as much about advocacy as it is about his death. Goodall's impending is in reality a carefully crafted media campaign in support of euthanasia and assisted suicide pushed by Exit International. My first thought when I read about Goodall was this is an Australian twist on the Brittany Maynard media campaign orchestrated by Compassion and Choices in 2014. For those unfamiliar with Maynard here is a link to Wikepedia:      

The newspaper stories about Goodall uniformly support of his desire to die. The stories are puff pieces--the sort of human interest stories mainstream news outlets churn out on a daily basis. For example, a story in the Boston Globe began as follows:

Champagne bubbles danced in fancy glasses and birthday candles burned atop a cheesecake marking 104 years of a long and accomplished life. David Goodall listened quietly as his loved ones started to sing. Then he took a breath, made a wish, and blew out the candles. Link:

I never cease to be amazed by the never-ending stream of stories that praise and support those that want to end their life via assisted suicide. I am equally puzzled by the way end of life is routinely framed as a human right. I read again and again about people who want to control the circumstances of their death. We already have that right and, more to the point, death is not a right but rather a biological certainty. Any and all medical treatments can be accepted or declined. Any person can deny medical treatment that will result in the end of life. Hospice care can and is often provided. For zealots, VSED (Voluntary Suspension of Eating and Drinking) is a legal way to end one's life. I see no reason for legislating end of life legislation in the form of assisted suicide.

My opposition to assisted suicide makes me decidedly unpopular if not a threat to others personal autonomy. Somehow in opposing assisted suicide I am imposing my will and beliefs on others. Even polite criticism is met with the harshest rebukes. Opposition to assisted suicide is somehow seen as in bad taste--a characteristic of an unreasonable person. When I state my opposition to assisted suicide people are perplexed. Why they wonder would anyone be opposed to assisted suicide? Do I want people to needlessly suffer? Am I a heartless uncompassionate person? Some people become confrontational and nasty. I have repeatedly heard others tell me "Just because you want to live with a disability does not mean others want that life". Unsaid is the assumption my life is miserable and less valuable. Also unsaid is that I must be leading a life filled with pain and misery. Nothing could be farther from the truth.

Given the cloak of anonymity, the real daggers come out for those that dare oppose assisted suicide. Death is a human right and disability is used to justify assisted suicide. Here I want to delve into the comments section in the Boston Globe article linked above. 

In the comments section one finds the following:

I know that when my mother lost the ability to read because of failing eyesight, a certain pall entered her life. Born in 1903, she was the oldest of thirteen (eight of whom survived), a woman with a sixth grade education who left school in order to help care for siblings. She was not a renowned scientist who derived what pleasure was left in his life by continuing to teach. Loss of sight, loss of the ability to securely move and loss of a sense of usefulness can certainly result.

When one commenter had the audacity to note the elderly were devalued and the article was a tragedy others responded with force.

Preventing by law anyone who is rational from making the decision to abridge his pain or shorten the dying process IS THE DEVALUING of the value of the individual....His life belongs to him and if he wishes to avoid another few years of disability that SHOULD BE HIS CHOICE. Do gooders saying he should be deprived of that choice and placed in a nice nursing home to be spoon fed...THOSE are the people devaluing this old man's value and standing as a rational individual.

you know what is MORE "devaluing"? Letting this man, against his own will, mind you, slowly decline into decrepitude, into being an invalid. THAT is devaluing his life more than anything else. You want to be respectful of the "value" of older people in society? Then treat them like cogent adults and respect THEIR wishes how they want to move on.

It is not about society, it is about ourselves. It is not about devaluing people who are elderly, it is about human existence and human choice which the government or church has no right to impose upon. This was not "an utterly tragic article", it was illuminating in helping people to be educated and be more informed in why some people may choose to die rather than live.

Aside from being blind using a wheelchair also justified assisted suicide.

he should be able to die now if he chooses to and not spend his last short time in a wheelchair, wearing a bib, Depends, and drooling into his lap.

Depression is dismissed out of hand:

He doesn't sound depressed, he sounds totally rational and reasonable to me.

You have outlived everyone you love, you don't have the physical ability to go or do, people treat you like you're mentally incapacitated, and you're not enjoying your days. It's up to you to decide you're over it, not the government.

It's ridiculous that he has to go to 8,000 miles to end his life. Sweet dreams!

In a comment that questioned the need for assisted suicide a person replied:

That's fine that you have your own opinions but don't try to label those that wish to have doctor services for dying with compassion...We simply have compassion for those who desire to die, you, on the other hand, want to judge others who you have no idea about...Why do you have to be so brutal with people you don't agree with?

When it comes to end of life people in my experience either ask all the wrong questions or do not ask any. I understand this to a degree. Americans are scared to death of dying. Too many die in nursing homes or hospitals. Our health care system does a dreadful job at managing death with grace and dignity for all involved. Here is what the average perosn fails to realize. In the words of Ira Byock, Director of Palliative Medicine at Dartmouth-Hitchcock Medical Center:

In truth, my colleagues in hospice and palliative care represent the most genuinely Pro-Life segment of American society. An unwavering affirmation of life leads most of us to oppose legalizing assisted suicide and euthanasia. But it is not about politics. It is simply that love of life--not in the abstract but love for the people we care for as patients--is the reason we do what we do. People who work in this field understand that to truly affirm life, one needs to affirm all of life--and that includes the part we call dying. 

Affirmation of life. All life. I, a severely disabled man, have a life worth living. This is not about politics. This is not about religion. This is not about imposing beliefs on others who feel differently. The dying have a right to live a good life until that is no longer possible. This is waht se should be talking about.