Ramps and Ascending or Descending Curbs and a Single Step According to the Wheelchair Manual

Ascending or descending a curb or single step is a risky proposition according to the wheelchair manual. The manual contains many bold exclamation points in a triangle next to each paragraph and drawing of ascending or descending a step or curb. Repeated warnings caution the wheelchair user to never attempt to ascend or descend a step. NEVER. Read carefully. This ascending and descending a single step or curb is a seven step process.

1. NEVER attempt to negotiate a curb or single step without assistance. 
2. Instruct your assistant to stand at the rear of your wheelchair, with the front of the wheelchair facing the obstacle.
3. NEVER attempt to negotiate any such obstacle backward. 
4. Instruct your assistant to tilt the chair up on the rear wheels so that the front casters clear the curb or step. 
5. Instruct your assistant to slowly move the chair forward and to gently lower the casters to the upper level as soon as you are sure that they are beyond the edge of the curb or step. 
6. Instruct your assistant to continue to roll the chair forward until the rear wheels contact the face of the curb or step. 
7. Instruct your assistant to lift and roll the rear wheels up too the upper level. 

Wow, there is a whole lot of instructing going on. What the above instructions do not take into account is the need to remove or rotate the anti tippers. Anti tippers according to the manual "were designed to prevent falls from the wheelchair". I am sure anti tippers do indeed prevent some people from falling. They are also completely impractical for any person who is independent and, to use manual jargon, a skilled rider.

Let me describe the wheelchair manual way to safely cross the street and ascend and descend a curb. Wheelchair manual way is an alternate universe I have never been to.

1. Check the weather forecast.  Avoid direct sunlight, sand, dirt, snow and all adverse weather conditions.
2. Never be alone. Always be dependent upon a caregiver or assistant.
3. At the curb come to a complete stop. Have your caretaker or assistant rotate the anti tippers.
4. Follow above steps 4 through 7.

The method for ascending and descending a step or curb is pure fantasy. An independent person such a myself has no assistant. The entire point of the wheelchair is to insure independence. When I cross the street I put my head down and in a crowded urban environment wear a baseball cap. I have learned it helps to keep my head down and make it impossible for bipeds to see my eyes. Without eye contact bipeds are far more likely to move laterally and out of my way. When I cross a street or approach a curb I do so with as much speed as humanly possible. When I am mere inches from the curb I pop a wheelie, lean forward and push the rear wheels as hard as humanly possible. Depending upon how fast I am moving I can independently ascend a curb of 6 to 8 inches. As for descending, I face the curb, pop a wheelie and drop of curb. This is effective but a bit jarring on the lower back. Sometimes if the concrete or asphalt is in bad repair I do exactly what the manual instructs me not to do--I negotiate the curb backwards.  Lean all the way forward and back off the curb. This is very effective and safe.

Aside from ascending and descending curbs, ramps too are dangerous. I kid you not! No ramp, slope, or hill should exceed 10 degrees and be more than 10 feet or 3 meters long. No slope or hill should ever be navigated alone.

If you need to use a short ramp 10 feet (3 meters) or less, the angle of the slope should not exceed 10 degrees, which corresponds to a slope of 17.63%, a rise or 1.74 feet (0.53 meters) over a distance of 10 feet (3 meters). Make sure to be assisted by a caregiver who has the physical ability to retain the wheelchair and its occupant. The wheelchair must always point facing up the slope. The caregiver should always remain in the bottom of the slope to retain the wheelchair. Always lock the anti tip in the safe position. Follow the same words of caution for a hill or slope of 10% or less. 

Again, these instructions are all too easy to laugh at but someone had to do some basic math. Calculations were made and perhaps some field testing was involved. Aside from the loss of independence, one must have an assistant mind you, I would estimate half of the ramps I regularly use are more than a 10% grade or 5.7 degree angle. Bridges come to mind as do many bike paths I use regularly. Needless to say, no ramp or slope should be navigated when wet. Slippery surfaces are especially dangerous.

The manual also includes an entire section for caregivers. I can only assume this section is where I learn how to tell my assistant or caregiver what to when the weather is perfect and environmental conditions permit me to go outside.  Among the highlights in the caregiver section include the fact a wheelchair user should never be left unattended. If unattended the caregiver should engage the wheelchair locks and place the beloved anti tippers in the safe position. Caregivers should also ensure the wheelchair has push handles and when pushing a wheelchair to stand in an upright position. It is equally important to "ask an experienced caregiver to explain safe assistance methods to you".

I am not sure what to tackle next. The wheelchair manual has truly endless fodder for laughs. Transferring out of the wheelchair is dangerous. Getting dressed in a wheelchair is strongly discouraged. Stairs are out of the question and warrant an entire bold faced paragraph that discuss the great danger they pose any wheelchair user. I also cannot under any circumstances use a bus or any paratransit service. The wheelchair manual is emphatic with regard to all mass transit. Motion Composites cannot, and does not, recommend any wheelchair transporting systems. For goodness sake, the manual is equally emphatic it is not safe to transport the wheelchair in a car. The front seat for the wheelchair is out of the question and even the rear seat is not recommended. It must be placed and secured in the rear of the vehicle, preferably the trunk. How am I, an expert rider, supposed to get the wheelchair in the trunk is not explained.  More tomorrow.

The Wheelchair Manual--Hilarity Abounds

My new wheelchair came with a 24 page manual. I have never read a wheelchair manual before. I am however a fan of manuals. I am one of the few people who actually reads manuals that come with a computer, smart phone, car, appliance, or any mechanical device. My son relentlessly teases me about this. When he visited me a few weeks ago we read over the wheelchair manual. Gales of laughter ensued. I have been using a wheelchair all wrong for over forty years!

Exactly what am I doing wrong? Apparently I am not supposed to go out in adverse environmental conditions. The performance of my wheelchair can be profoundly affected by sand, mud, rain, snow and rough surfaces. Apparently "exposure to water or excessive moisture can be damaging and may even cause the wheelchair to corrode over the long term. DO NOT leave your wheelchair in humid environments such as the bathroom (e.g. while taking a shower). Store the wheelchair in a dry and cool location. The wheelchair should be stored away from direct exposure to sunlight. If the wheelchair is wet, dry all parts with a cloth before storing it. DO NOT use your wheelchair in the shower, pool, or other water situations".

I am expected to avoid exposing my wheelchair to direct sun light. That will be a bit difficult given the fact the Denver area gets over 300 days of sunshine a year. I had no idea the bathroom was off limits. It is assumed every wheelchair user lives with another person--specifically a caretaker. This mysterious person is responsible for removing the wheelchair from the bathroom when the shower is on. What becomes quickly apparent when reading the manual is that no wheelchair user can be independent. The wheelchair itself is not designed to be used independently. At all times the wheelchair user should be assisted by caregivers. On each and every page there is mention of caregivers. On each and every page the manual, in no uncertain terms, the wheelchair user is warned to "CONSULT your doctor, nurse, or therapist". I don't know any physician that has a remote understanding of how to use a wheelchair. This advice makes no sense.

Certain items appeared to be constant in the manual and the wheelchair industry in general. Wheelchair manufacturers love anti tippers. A wheelchair should NEVER be used without anti tippers. The manual is emphatic about this. I did not order anti tippers for my new wheelchair. I did not order a seat belt either. The wheelchair came with a seat belt and anti tippers installed on the frame. Wheelchairs come with all sorts of crap attached to them. I get this. There is much profit to be made with the installation of needless parts. Anti tippers are not cheap. On my chair they cost $112. The positioning seat belt was $33.90. The padded calf strap was 72.00. Carbon fiber side clothing guards were $232. The list goes on and on. Thus the stated price of the wheelchair and the actual cost are very different. My wheelchair listed for $2,076.00. By the time I was done with various upgrades the price tripled. The carbon fiber frame upgrade alone was $1,360.00.

I am well aware the manual exists to cover Motion Composites (the Canadian manufacturer) liability. What I find bothersome are the assumptions made. A wheelchair such as mine is well designed for a "skilled rider", the term consistently used in the manual. Yet if used as suggested in the manual manual would render such a person powerless. The person using the wheelchair is emphatically directed to consult experts such as physicians, therapists, qualified technicians for adjusting the wheelchair etc. At no point is the "skilled rider" considered the expert.

My favorite part of the wheelchair manual is the short section on popping wheelies. Popping a wheelie is a "dangerous maneuver". The manual is litered with warnings symbolized by an exclamation point inside a triangle. The message is not subtle. Yet this does not stop Motion Composites from using the image of a man using the wheelchair popping a wheelie!

 However inside the manual there are all sorts of warning about this "dangerous maneuver".

Motion Composites knows "some wheelchair users will ignore this warning". This warning will indeed be ignored. Most wheelchairs are now being manufactured with small solid front wheels typically less than four inches making wheelies are an essential skill. I learned how to pop a wheelie long ago. The year was 1978. I did not consult my health care provider. I did not have an assistant who could catch me before I fell. I was not a skilled rider at the time. I learned how to pop a wheelie at college shortly after I was paralyzed. A friend explained how to pop a wheelie and demonstrated his skill.  I then proceeded to go to my dorm room, drink six cans of beer and give wheelies a try. After falling about a dozen times I had it down!

I can't help but wonder about the wheelchair manual. Do people in the industry actually believe what is written? Are anti tippers essential to a wheelchair user? Is popping a wheelie really dangerous? Do people actually design wheelchairs that cannot be used in adverse environmental conditions. I want to scoff at these questions but cannot. I think of my friends who use larger impressive, and complex power chairs. These modern marvels cost as much as a brand new car. I cannot tell you how many times I have seen a person using a power chair with a cheap plastic baggie over the controller in the rain. It makes no sense to me to manufacture a power chair with a controller that is not water proof. Does Motion Composites really expect my wheelchair to be magically removed and returned by a caregiver when I shower and steam up the bathroom? As I wrote yesterday, the wheelchair industry makes no sense. Tomorrow i will continue this theme as I further deconstruct the wheelchair owners manual.

United Airlines Destroys My Wheelchair

Since I started this blog in 2007 I have posted on a regular basis. I write for myself but also for all those with a disability who oppose ableism. In recent weeks many people have reached out to me about my extended silence. Never before have I gone so long without posting at Bad Cripple. I am alive and well but in late October my very existence spun out of control. For quite some time I was deeply depressed. I considered giving up. Giving up writing. Giving up the fight for disability rights. Giving up teaching. Giving up on life. Despair overwhelmed me. All this was triggered by a single life altering event. On October 28, United Airlines destroyed my wheelchair. Upon arrival at Denver, my wheelchair came out of the cargo hold in pieces. I was stunned by the destruction. My wheelchair was over engineered in the extreme. It was heavy. It was rugged. It was built with triple redundancy so the frame was as rigid and strong as humanly possible. I cannot imagine the great force required to destroy my wheelchair but destroyed it was.

Since October 28, I have been in a mind numbing stupor. Upon seeing my wheelchair in pieces my first reaction was disbelief. I felt as though a part of my body had been amputated. My wheelchair is not akin to my legs--this terrible analogy is often used by health care professionals and those that do not use a wheelchair. My wheelchair is not a body part but rather an extension of who I am as a human being. As I sat in a deeply uncomfortable chair and in pain late at night in a nearly deserted airport I knew that my life had been radically alerted. I knew instantly that my life would be comprised for weeks if not months and possibly years.

Disbelief quickly gave way to mourning. I am not ashamed to admit that I shed many tears on October 28 and the weeks and months that followed. I castigated myself for flying. Every time I fly and my wheelchair is taken away and stored in the cargo hold I know there is a distinct possibility that it will be destroyed. The airline industry destroys wheelchairs and all sorts of mobility devices on a regular basis. As I cried none of this mattered. I missed my wheelchair. I knew exactly how to move. I knew how it rode when the front bearings were worn out or new. I knew the exact tire pressure at any time. I knew its tipping points. I knew how far I could lean forward, backwards or to the side without falling. I knew how it reacted to sub zero temperatures and the heat. I loved how the frame creaked when I was outside in frigid weather. My wheelchair rarely failed me. There was not one extra screw on the wheelchair. Every screw had a purpose. No more than three allen wrenches were required to make basic adjustments. A single allen wrench set could empower me to do anything I wanted to the frame. My wheelchair was a simple elegant design.

My loss is immeasurable. The destruction of my wheelchair absolutely devastated me. Since that night, I have wondered, feared really, about the quality of my life. I was shaken to my core in large part because I knew that it would be long time (months) before my life would return to normal. That night airline personnel were as shocked as I was by the destruction. Two United Airlines employees told me they had never seen anything like it in their careers. It was instantly apparent my wheelchair was destroyed beyond repair. Judge for yourself.

As the photographs illustrate one back upright was completely sheared off. The other upright was also broken and was held on by a thread. The bottom close up shows a part of the frame was sheared off and completely missing. What the photographs do not show is that the frame itself was badly bent and the left front wheel was damaged. Since I arrived in Denver on a late Saturday night, there was precious little help available. A ground maintenance crew worked with me to jury rig the wheelchair so it was somewhat operational. We used two squeege handles to use as temporary uprights. I had enough support to have a tenuous sense of balance. The best I could do was get out of the terminal, file a claim and hope a loaner wheelchair could be found. The odds of this happening quickly were nil. The fact I had to file the claim at the baggage claim office emphasized how unimportant the airline industry considers wheelchairs.

United Airline does not directly deal with broken wheelchairs. They use an outside contractor, Global Recovery Network, to find a loaner wheelchair and eventual replacement. On October 28 I was repeatedly assured United airlines would do everything in their power to replace my wheelchair. I was beyond skeptical. Wheelchairs are not cheap. Worse, wheelchairs are poorly made. Wheelchairs are not built for the end user in the United States. Wheelchairs are constructed to meet insurance standard price points. Wheelchairs are not built to last. A decent manual wheelchair costs thousands of dollars and likely will last three to five years when rigorously used. In short, I was screwed. Everything I wanted to accomplish in the months ahead would not get done. I dreaded the future.  

Beyond the emotional devastation, I was well aware I could not function. I could get around my apartment but there was no chance I could go outside. I could not shower because I use the back uprights to balance getting out of the tub. I was also at a high risk for a skin break down because I was sitting differently. The temporary uprights were flimsy at best so the next day it was off to the Home Depot for something, anything, that could operate as an upright.

Metal conduit pipe was the best solution. Along with copious amounts of duct tape I fashioned a weak upright. I still could not go outside but I was not at a significant risk for falling. The following days were spent on the phone with United Airlines and Global Recovery Network. Trying to get an appropriately fitting loaner wheelchair was going to be very difficult--think needle in a haystack. I have long legs that require my wheelchair be very high as in floor to seat height. Getting a loaner wheelchair and eventual replacement was going to be a slow laborious process. Most of my days were spent on the phone with United Airlines and Global Recovery Network. It took a week to get a loaner wheelchair that was remotely useful. Very quickly I realized that until a new wheelchair arrived pain was going to be a constant companion. Within seven days I also developed a superficial pressure sore on my buttocks. My seating position was extremely poor and placed too much pressure on my skin.

What sticks out in my mind months later is how well United Airlines and their subcontractor Global Recovery Network acted. Phone calls were returned promptly. Every person I spoke with was the consummate professional. United Airlines assured me again and again that I was to get the best replacement humanly possible. One gentleman from United who I particularly liked told me "we are in the airline business. We know nothing about wheelchairs. Get what you need. We broke your wheelchair and we will replace it. Global Recovery Network knows how to facilitate this." What I appreciated was the system in place to replace my wheelchair. There was no ambiguity. We broke your wheelchair. We will replace it.

Global Recovery Network did indeed know how to facilitate the process. What United Airlines and Global Recovery Network cannot do is make those charged within the durable medical industry for replacing wheelchairs act quickly or professionally. I have avoided the wheelchair industry because decades ago I realized they provided abysmal customer service. Ableism is rampant in the wheelchair industry. The end user is treated as an incompetent annoying child. Getting a new wheelchair I knew was going to be a painful and laborious process.

I do not understand the dysfunctional wheelchair industry. The complete and utter lack of professionalism is shocking. The dealer I was forced to interact with was terrible. Phone calls and emails took days to return. The reviews for the company on Glassdoor and multiple websites were scathing.  To get a phone call returned required pressure from United Airlines and Global Recovery.
The office person I had to deal with was point blank rude and condescending. Yes, they would replace my wheelchair but it would be done at their pace, at the times and dates they chose. It was not until November 8 that a person was even available to meet with me. This initial evaluation would start the process of ordering and selecting a wheelchair. While office personnel were miserable to deal with, the two people who actually came to my home were competent professionals. The seating specialist knew the industry and the technician knew how to adjust a wheelchair. Yet even these people can only do so much. It was not until the day before Thanksgiving, November 22, that two demo wheelchairs would arrive. Almost a full month had passed. A wheelchair had not even been ordered.

Did anyone think about the quality of my life? It is one thing for an airline to destroy a wheelchair but what is never ever discussed is the ramifications. I lost months of time. Even today some three months later I am still dealing with the fallout of my wheelchair being destroyed and not replaced in a timely fashion. Exactly what are we wheelchair users supposed to do? Well, what I did was cancel plans thanks to a skin sore that prevented me from sitting. Life got pushed to the wayside. Pain became a constant. Yet there was no rush, no sense of importance from the company to replace my wheelchair. For goodness sake, a month went by before I could even see the two wheelchairs that might work for me. This is unacceptable. An evaluation should have been done within 48 hours of my wheelchair being destroyed--that should be the industry standard. I should have been treated with respect by office staff at the durable medical goods company but was not. Amazingly, I was told by many the company I dealt with was better than all alternatives in the state of Colorado. United Airlines and Global Recovery Network shared my feelings. The wheelchair industry is dysfunctional and we people with a disability suffer. And believe me in the last months I have indeed suffered.

While I have not dealt with wheelchair manufacturers, I do follow the industry. It took a matter of days to realize my choices in terms of wheelchairs was limited. Based on my TiLite loaner wheelchair, I knew even the titanium frame would not last long. Everything about the TiLite line and its competitor Quickie models was cheap. Poorly constructed and designed, these wheelchairs were not meant to last. I estimated a frame would last two years at most. Only two wheelchairs would possibly work. A Panthera, the lightest wheelchair manufactured of carbon fiber or the Apex also made of carbon fiber made by Motion Composites. It took less than five minutes to reject the far more expensive Panthera (with upgrades it would cost well over $10,000). It is a beautiful wheelchair. It is slick, has great design lines, and phenomenal look. It really could be in a museum. What it had that I despised was branding everywhere. The wheelchair screamed money. Yes, this is a wheelchair for the 1% and they want the world to know it. As the architect Louis Sullivan argued, form follows function. The Panthera is a museum piece and not truly functional. Given the cost, it is wildly impractical. Forget about spare parts or be willing to wait a long time for them. Forget about working on the wheelchair if something goes wrong. More to the point, am I going to realistically put a $10,000 wheelchair in the hold of an airplane? Not a chance. I decided to go with the Apex wheelchair with the costly carbon fiber frame upgrade. I also added multiple upgrades such as spinergy wheels.

The Apex wheelchair arrived on a late afternoon shortly before Christmas.  The seating position is a radical change for me. Modern wheelchairs are squat, take up little space, have small front wheels, narrow one inch rear wheels, and are low to the ground. My old wheelchair was quite long, heavy, had 8x1 3/4 front wheels, 24x1 3/8 ths rear wheels, and a high back. It was a 1980s design and looked antiquated by modern standards. From time to time young paralyzed people would look at my wheelchair with a sort of curious disgust. I would laugh and tell them that my frame is likely older than they are!

As I write these words, I am sitting in my new wheelchair. It is all black and rather Darth Vader looking. I don't know my wheelchair well. The first four weeks using the wheelchair were filled with pain. I hurt everywhere from the changed seating position. All balance points were different. I worried about falling constantly. My skin was getting red from pressure in places it has never been before. I had to build up the amount of time I could sit in it daily. It has only been in the last week that I do not spend many hours in bed relieving the pressure on my skin. Getting on and off the train has been an adventure. With solid small front wheels I need to lean back far more often than I ever did when navigating cross walks. The first trip to Denver via the train was a nerve racking experience. Just imagine you have sat the same way for nearly forty years and suddenly your spouse throws out your favorite chair.

October 28 was life altering in ways that are hard to explain. By way of analogy, how can one explain paralysis to those who are not paralyzed? Any competent neurologist would classify me as a T-3 complete paraplegic. How do I explain that I do indeed have sensation but far from typical. How do I explain the constant burning in my hips that in no way conforms to a pain scale of one to ten? How do I explain that cleaning a wound on my foot is painful but only hours later? How do I explain I could be outside all day in frigid temperatures skiing or biking but get cold eight or nine hours later? How do I explain the destruction of my wheelchair left me unable to write for months on end? How do I explain the emotional trauma caused by the destruction of my wheelchair? How do I explain the love lost for my old wheelchair? How do I explain the flood of tears of tears as I threw my old wheelchair frame in a dumpster? How do I explain how outrageous it is that airlines destroy wheelchairs on a regular basis? How do I explain the weeks and months lost?

I do not have any answers for the above.  I do know the destruction of my wheelchair has changed the direction of my life. It has thrown me in a way beyond that is beyond imagination. A part of me died on October 28. It was not until today, February 1, that I can begin to adapt; but adapt I will. We cripples are world class adapters. I have the potential to fall in love with my new wheelchair. I liken my experience to the birth of a child. My wheelchair is like a new born infant who I don't know yet love. There is much for me to learn. What I don't know is if my wheelchair has a soul. To date, it feels cold and clinical. Carbon fiber is light weight and strong. Indeed, the frame weighs just 9.2 pounds and feels as rigid as steel triple its weight. I have not become one with my wheelchair. The human wheelchair relationship is akin to a unique symbiotic relationship. What I need now is time. Time to forge a relationship with the amazing piece of technology I use and sit in. To this end, I will be posting a lot in the coming days about my relationship with my new wheelchair. I do so in the effort to bridge the cultural gap between those who use a wheelchair and those that do not. Unlike the bipeds that surround me, absolutely no stigma is attached to wheelchair use. In fact, I see a wheelchair as one of the most empowering inventions ever made. The problem as I see it (and always have seen it since I read the Body Silent) is cultural. We as a culture devalue those who are different. The more obvious the difference, the greater the stigma. This cultural divide is hysterically evident in the Apex wheelchair manual. About the only laughs I have had in recent months has been reading the wheelchair manual. For the last 40 years I have been using a wheelchair all wrong! I will be posting about this frequently as it is rich fodder for humor and cultural analysis. So yes I am back. May the bigoted bipeds tremble as I roar about in my sleek new rigid carbon fiber wheelchair.

Bonnie Liltz, Convicted Murderer Seeks to Have Her Sentence Voided

In 2015 Bonnie Liltz murdered her disabled daughter. Liltz was convicted of involuntary manslaughter and Judge Joel Greenblatt imposed a four year sentence. Four years for murdering her daughter. I was shocked by the sentence. I was more shocked that the defense attorneys and Cook County prosecutors in Illinois agreed that Liltz should get probation. What makes the Liltz case of murder different? Liltz daughter, Courtney, had a severe disability. Liltz is back in the news because the Illinois Supreme Court has denied her request to appeal her sentence. Liltz can appeal to the Supreme Court but has of today decided to ask Governor Bruce Rainier to commute her sentence. In 2015 Liltz argued that she was dying and a four year sentence was tantamount to a death sentence. There is no question Liltz health is not good. There is also no question that her medical care in prison would be substandard (though I should add here she has not spent much time in prison appealing her case). During her short incarceration, Liltz rapidly lost weight and argued the state correctional system could not provide adequate medical care.

I wrote about Liltz here at Bad Cripple. Link: http://badcripple.blogspot.com/2016/05/too-much-sympathy-bonnie-liltz.html  In 2015 and 2016 I stated murder is murder. There is no question Liltz murdered her daughter. Liltz attorney, Thomas Glasgow, has made a very public effort to portray Liltz in as favorable a light as humanly possible. This is his job. I don't like it nor do I care for the way he is trying to spin the case when stating "We're not asking for a pardon. We're not asking for her to be excused or forgiven for her crime. We're asking that she be released to receive medical treatment". This is grossly misleading when put in the larger social context. The context here is parents murdering their disabled children. Ableism can be deadly. We as a society have utterly failed to support parents who care for children with a disability. We have driven people like Liltz and others to murder their own children. Liltz is far from alone. Many parents murder their disabled children. What makes these cases heart breaking are the circumstances. Institutional care for children and adults with profound and severe disabilities is in far too many cases is abysmal. Grim reading within disability studies abounds that emphatically details our respective social failure to care for the most vulnerable among us. The historic opus, Acts of Mercy by Steven J. Taylor details the conditions of mental institutions and for religious objectors during World War II. Read Allison C. Carey On the Margins of Citizenship about intellectual disability and civil rights.  Better yet, check out ASAN website and the day of remembrance for all those children and adults killed by they parents. Link: http://autisticadvocacy.org/2016/01/2016-day-of-mourning-vigils/ In the last five years ASAN reports that one hundred and eighty people with a disability have been murdered by their parents.

We see the same pattern repeating over and over again. A parent kills their disabled child. The media portrays these murders as justifiable and inevitable due to the "burden" of having a disabled person in the family. If a parent stands trial, they are given sympathy and comparatively lighter sentences, if they are sentenced at all. The victims are disregarded, blamed for their own murder at the hands of the person they should have been able to trust the most, and ultimately forgotten. And then the cycle repeats. 

Murder is of course the most extreme response to disability. As such, murderers such as Liltz appeal to the very worst of human kindness. Liltz wants sympathy--and she has and will continue to get plenty of it. The assumption here is that her daughter Courtney was a burden to care for. Liltz, I read again and again, was a kind and loving mother for decades. Sorry but I have no sympathy for parents who murder their children.  In stating this I become the bad guy. I am the hard ass that is unforgiving. I am heartless. Just as I reject a shred of sympathy for Liltz, I assert that all life has value. Courtney had the right to live. All people with a disability have the right to live. This should be a given but is not. Ableism abounds. Ableism takes many forms from flat out open hostility to subtle and insidious forms of prejudice.

I know of only one way to undermine ableism, murderers such as Liltz, and a court system that values some lives more than others. Fight back. Assert one's civil rights. Make others, typical others, feel uncomfortable.  As I have been writing I am reminded of a powerful post at Crutches and Spice entitled "Its Time for Disabled People to be Unapologetically Selfish and Intolerant" I read a few months ago. Link: https://crutchesandspice.com/2017/06/06/its-time-for-disabled-people-to-be-unapologetically-selfish-and-intolerant/amp/

You heard me! Fight me. I want disabled people to be unapologetically selfish. I want you to bathe in hedonism and to move with the bravado of a mediocre man explaining to a woman her own expertise. I want to see you striving to love yourselves and in the moments you cannot, being patient with yourself, and if you can’t be patient, at least be kind. I want to see your selfies, I want to see how #DisabledandCute you are. I want to see you being sexy, vulnerable and yourselves. I want to see my Quips, my crips of color, my indigenous disabled, my hijabi disabled. I want to see you all in all your glory, your good days and your bad.

I want you to be intolerant. I want you to shut down the voices that question the necessity of your existence. I want you to block the discourse that portrays you as anything less than human. I want you to use all the four-letter words you know. Shut down the devil’s advocates and speak truth to power. How long are we expected to entertain the idea of our genocide? Be intolerant of the violence that seeks to rob you of your peace, and take self-care when you feel drained.

If you’re wondering why I’m asking you to be these things, the answer is very simple: you are a real person, not an idea or concept. The problem with throwing around terms like “Pre Existing Condition” is that it is prescriptive and turns real people into inconvenient numbers that need shuffling or rearranging. I don’t want you to delve into problematic person-first language. I want you to show what disability looks like—because it looks like you and it looks like me. It looks like the friends I’ve made writing for this site. It looks like the people I hope to collaborate with and to get to know. It looks like people I love. It looks like people I could lose. So when people ask you how healthcare affects you, I want you to respond with “I” and “we.” Let them know that the person before them is at risk, not some idea of a person.

When I read such powerful words I am filled with pride. My people come in all sizes and colors. We people with a disability are masters of adaptation. We are so much more than the iconic wheelchair logo. We are blind, deaf, physically and mentally impaired. We have deficits that are as varied as they are devastating. And yet like typical others we get up in the morning, kiss our loved ones, go to work, play and eat. It is almost as though we are human. Human like Courtney Liltz and one hundred and eighty other people who were murdered by their parents. I for one will not forget. I will relentlessly fight on. 

Jeremy Bentham: Pleasure and Pain

In the last four months my experience with pain has been problematic. Neuropathic pain is difficult to manage and poorly understood. My threshold for pain is exceptionally high--a physical trait that came in handy as a morbidly sick kid and a paralyzed adult. I am quite capable of putting the pain I experience out of my mind on a daily basis. If I concentrate on something intellectually stimulating during the work day I can work effectively. The key here is to be active physically or intellectually at every moment. The problem arises when the work day is over and I am physically and intellectually spent. This is when I struggle. I have had some very long nights in recent months. For me the pain is largely in my hips and feels like an unrelenting burning sensation. Usually I can fall asleep but am woken by the pain between 2am and 3am. Sleep after pain wakes me up is elusive.

There is no doubt I am very lucky. Many people with neuropathic pain truly suffer. No medications I am aware truly eliminate neuropathic pain. Clouding the mind with narcotics is out of the question. THC found in recreational marijuana provides some relief but I do not like the high associated with it. Cardiologists frown upon alcohol so I drink in strict moderation. No more rum and coke for me. CBD oil and creams are something I have started to explore. None have been effective to date. In short, pain relief is illusive.

Middle of the night pain sucks. Again, I am lucky. I rest and read. Lately I have been reading on my phone. There is an amazing amount of high quality classic scholarship readily available. Lately I have been reading work by Jeremy Bentham. Today, Bentam is known for his moral philosophy and utilitarianism. I tried reading enlightenment thinkers such as John Locke and David Hume but found Benthem more relevant. Bentham's empiricism appeals to my anthropological mind. Bentham's hedonistic account of what motivates people in terms of pleasure and pain presents an interesting dichotomy. When one is sitting up in the middle of the night experiencing neuropathic pain happiness or pleasure is reduced to living pain free. Life is very simple when this dichotomy is at the forefront of one's mind. In the Introduction to the Principals of Morals and Legislation Benthram wrote:

Nature has placed mankind under the governance of two sovereign masters, pain and pleasure. It is for them alone to point out what we ought to do, as well as to determine what we shall do. On the one hand the standard of right and wrong, on the other the chain of causes and effects, are fastened to their throne. They govern us in all we do, in all we say, in all we think: every effort we can make to throw off our subjugation, will serve but to demonstrate and confirm it.

Life is exceedingly complex yet when reduced to principals of pleasure and pain at 2am constructing a calculus of value becomes possible. Since last June when I started reading Bentham again, I have found solace in the pain pleasure dichotomy. I accept the pain that washes over my hips late at night and appreciate the ability of my mind to block out pain during the day. This is especially helpful as my pain is wildly unpredictable. I can go days or weeks without pain. I can experience pain every day and it can be relentless for an hour, a day, a month or many months. It comes and goes and flows over  me like water. For me, pain is a glacial process. It is present or not present. It is like a light switch. Pain is on or off. Hence I experience pain or pleasure in a visceral way. Thank you Mr. Bentham.

I set eyes upon Jeremy Bentham's body on display at the University College London in the late 1980s. Way back then, I had no pain. Frankly, his head was and remains gross. His body has been on display for more than 150 years. Here is proof in its preserved glory.

Bentham has been in the news the last week because his head is going to be on display for the first time in decades. Upon his death, Bentham wished his body would be put on display. Bentham was an atheist and did not believe in Christian burial practices. He wanted his body to be of use both in life and death or so the legend goes. While his body has been on display, his head has been deemed too grotesque for public consumption (a mummification error took place).  At University College London a new exhibit examining death and preservation is is being held and in the estimation of Subhadra Das, Curator of collections at University College London Culture, "I think Bentham would certainly have approved of his head going on public display. It's what he intended." I agree with this whole heartedly. What I am not so sure about is the fact samples of Bentham's DNA have been taken to test theories that he may or may not have had Autism or Aspergers. I am not opposed to testing ancient  DNA or the DNA of Bentham. I do wonder though why we have a morbid fascination with whether Bentham had Autism. Is it not enough he considered Christian burial practices to be "nonsense on stilts". Regardless, I agree with Das it is worth exploring what drove Bentham to donate his body and address the challenges of putting human remains material on display.

Back to neuropathic pain. For me burning is the most common sensation I feel. Imagine a cast iron hot poker being pressed against your skin as though you were being branded. That is what I feel. I also feel tingling, shooting, sharp, and jabbing pain. Prickling pain is also common. Pain reminds me I am alive. Pain also makes me appreciate pleasure. There is so much pleasure we humans overlook and dismiss. The feeling of a warm shower. The sensation of sun on your face. Being outside in frigid temperatures and feeling a bone chilling cold blow across your body. The pleasure of my burning shoulders after a long handcycle ride.  Sexual pleasure in all its breadth. The pleasure associated with food. The joys and pleasures of life are as bottomless and enduring as the pain I experience. Again, thank you Mr. Bentham for making me think. Maybe being awoken in pain at 2am is not such a bad thing.

Why Don't You Just Die

I had to do something inconsequential yesterday. I needed to go to the apartment building office where I live and put in a simple work request. I planned to do this at 9am shortly after the office opened. I went to the office in question at 4:30pm. I did not exit my apartment until late afternoon because I was overcome with anxiety. When one has a disability, going outside can be dangerous. I do not typically fear for my physical safety. I fear and dread what people will say to me. I feel as though I am a Martian living on the planet Earth and the Earthlings that surround me hate my existence. Worse, they have the means to easily destroy me. In New York, I was accustom to being on guard at all times. In Denver, I have become more relaxed--perhaps complacent. The routine hostility I encountered in gritty Syracuse is largely absent. The homeless have not harassed me in Denver.  No one has followed me. Not a single person has called me the anti-Christ. I have had some surly bus drivers and train conductors deploy lifts with obvious disdain. I have received the usual stares from strangers. I have had people inappropriately leap out of my way in fear. No one, however, has said anything truly rotten to me since I arrived in Denver. Last week that changed.

I was trying to get an RTD discount card available to people with a disability. To get such a card is exacting. Forms must be filled out perfectly. One must waive all rights to privacy in terms of medical records. The state of Colorado wants full access to any and all medical information. I am entitled to a discount but it comes at a cost that is not insignificant. A statement from a physician that I have a permanent disability is not adequate in this GOP dominated state. I must be examined by a physician. I am also required to go in person to an RTD office, be photographed, issued a discount card, and forgo my right to medical privacy. Despite the humiliation ritual involved, I remained in a good mood. I reminded myself that I live in the Denver suburbs and I am less than 30 minutes from downtown. Denver  is a major western city. I ride the train regularly and exit into Union Station. Cool cafes abound. The city is alive. I can walk to Coors Field and see a baseball game. Every type of food imaginable is readily available. Marijuana is legal. Bookstores abound. The city has a positive vibe and its diversity is wildly appealing to me.

Feeling good and waiting for the light to change so I can cross the street I feel eyes boring into my body. The hair on the back of my neck goes up. Oh no I think. I look to my right and see a well dressed business man in an expensive suit and tie. His highly polished black shoes and suit scream money. He is not flashy but rather exceptionally well dressed and looks like a master of the universe. About six feet tall he sneers at me in complete and utter disgust. Here it comes I think. He did not disappoint.

"Why don't you people just die? His head shakes: "What a waste of life". The light turns green and off he goes.

I have heard this sort of comment for the last forty years. Of course such a comment is not the norm. People only make this comment when I am alone and assumed to be an easy target. Such bigoted thoughts are not socially acceptable. However, alone at a corner, I am an easy target. Strangers feel empowered to be as cutting as humanly possible verbally and physically. There is no question in my mind this man and others wish I did not exist. My presence was an affront. This is a base form of ableism. I try to tell myself social progress has been made since I was paralyzed. I get on the bus and train without rancor. The physical environment is far more accessible than it once was. This line of thought feels delusional when a stranger tells me "Why Don't you just die". What is my recourse? I could call the police, the FBI or Department of Justice and report a hate crime. Hate crimes based on one's perceived or actual race, color, religion, national origin or gender are illegal. While hate crimes protections have existed since 1968 it was not until 2009 that the word disability was included. According to the FBI, of all the hate crimes reported in 2015 1.7% were disability based. If I tried to report this man I likely would be laughed at. The police have better things to do and I have no doubt any officer that would show up has no clue what ableism is. Given the current presidential administration, I know the DOJ will never act on a supposedly isolated incident.  As always, I know where I stand. Alone. My people, we crippled people, are about as disenfranchised as humanly possible. Report a hate a crime? Good luck with that.

More than 25 years post Americans with Disability Act and four decades of progressive legislation designed to empower people with a disability, disability based bigotry abounds. Disability based bigotry has taken a toll on me. Yesterday, it took me all day to work up the courage to walk outside my door, go down a hall way, use an elevator, and request a work order be created by the apartment building office. This most mundane chore required great deal of will power.

I for one will never succumb to disability based discrimination. I will continue to leave my home. I will get on trains, busses, and air planes. I will work, write, and teach. I will do the ordinary. I will live life to the fullest. None of this makes me special. I am certainly not inspiring. I am overcoming though. I am overcoming a hostile social environment in which a well dressed business man in a major American city feels it is perfectly acceptable to tell me I should "just die". A social tragedy took place in my estimation. The tragedy was not my existence or the fact I am a paralyzed man. The tragedy was crass bigotry freely expressed and free of any consequences.

A Bodily Tune Up on the RTD

I have spent the majority of my life living in New York. While I consider myself a hardened New Yorker, I never truly felt I had a place to call home in the city or suburbia. In suburbia I was always the only wheelchair user in town. When I lived in Manhattan long ago, I was never welcomed. The subway system was impossible to access and getting on a bus was a battle. In the pre ADA era, my presence was decidedly unwelcome. New Yorkers being the people they are were not shy about letting me know I had no place in society. I was screamed at on a regular basis and more than once was spit on for getting on a bus. The net result is loneliness has been a life long companion.  I have always longed to live among my people. My people are the disenfranchised hard ass survivors who through bad luck or happenstance live with a  long term disability. The physical or mental malady does not matter. All those with an atypical body are welcome in my conception of the world. Give me  people with a host of mental illnesses, traumatic brain injury, spinal cord injury, amputees, the deaf and hard of hearing, those with any neurological condition etc. These are the people I gravitate toward. 

Since my arrival in the Denver area, I have largely relied upon mass transportation. Before I moved to Denver I knew the mass transportation system would be vastly superior to anything I had used in the past. Certain cities like Denver with a long history of disability activism excel at providing excellent and accessible mass transit. I spend a good portion of my day on various busses and trains. This prompts me to think about why I have always been drawn to mass transit. I think my attraction to mass transit is largely based on my back ground in anthropology. The life blood of the discipline is ethnography and participant observation. In anthropology one obtains "data" via experience. That "data" is gathered via ethnography--living among a people--and participant observation--doing what others one is studying do. When I walk out the door, I feel as though I am conducting an ethnography among hostile people. The people I interact with are the hordes of bipeds that for complex reasons find my existence objectionable. I am perpetually out of place. Social denigration is commonplace in large part because the social and constructed environment is not designed to be inclusive. The intolerant reaction to my existence takes a heavy toll on one's body and the manner in which I am willing to engage others. In trying to sort out why I feel different in Denver I turned to Erving Goffman whose seminal work on stigma and the social model of disability laid the foundation of disability studies. Goffman's work has stood the test of time and I cam across a rather obscure paper that was published after his death: "On Fieldwork" published in the Journal of Contemporary Ethnography circa 1989. He wrote: 

by subjecting yourself, your own body and your own personality, and your own social situation, to the set of contingencies that play upon a set of individuals, so that you can physically and ecologically penetrate their circle of response to their social situation . . . . So that you are close to them while they are responding to what life does to them. I feel that the way this is done is to not, of course, just listen to what they talk about, but to pick up on their minor grunts and groans . . . . You try to accept all of the desirable and undesirable things that are a feature of their life. That ‘tunes your body up’ and with your ‘tuned-up’ body and with the ecological right to be close to them (which you’ve obtained by one sneaky means or another), you are in a position to note their gestural, visual, bodily response to what’s going on around them and you’re empathetic enough— because you’ve been taking the same crap they’ve been taking—to sense what it is that they’re responding to. To me, that’s the core of observation. 

When one uses a wheelchair or has an obvious disability, one is always "tuned up". My social radar is never turned off. When I am on the bus or train I am on high alert at all times. As Goffman noted, if you are empathetic enough you can make sense of what people are responding to. No other social environment is as diverse and unpredictable as mass transit. The social exchanges I have had since moving to Denver fall into a few group composites:

Homeless People: Homeless people are often quick to ask me why I use a wheelchair and what I do for a living. I tell homeless people I am an anthropologist working in bioethics. I stated this just yesterday and a homeless man proceeded to tell me about a near fatal motorcycle crash he had that led to bankruptcy, opiate and alcohol addiction, and semi homeless life. He told me you want to see ethics fall by the wayside, go to the ER as a street person and seek health care. No health care will be provided as the first call is to the police to get you out of the ER. Every word uttered is considered a lie and no one has a heart. You can't so much as get a band aide. The bitterness he felt was palatable as was his angst. The man was a raw nerve of hurt.

Baseball Fans: The Colorado Rockies play at Coors Field and in August they have a had a few 1:10pm games. I have gone to a few games and the NY Mets cap I regularly wear has led to some interesting baseball related conversations. The social exchanges are disconcertingly normal.

New Age Healers: Non religious natural remedy health nut people in Denver are determined to heal me. These people are not shy about vitamin regimes as a cure for paralysis. These people often hand me their cards and are all too happy to tell me with a change in life style I would no longer need a wheelchair. With this group, I am mute. Polite but silent.

The Sob Story: People want to know why I am crippled. I am good at avoiding this question and shutting down this line of inquiry. However, many people who rudely inquire about paralysis are quick to share their tragic story. The story is always the same. Tragic accident followed by a miracle recovery.

Terminally Ill: This is a new group I have not had much experience with. At least six times in the last two months a person has sat near me on the train, asked me about paralysis and quickly rifts into a discussion about end of life. I find these conversations odd. Is it assumed that I am terminally ill because I use a wheelchair? Is the leaping off point simply my disability and the assumption I have been through the medical mill? Do I look like a doctor? I am told the diagnosis and the prospects for life which are usually quite dim. They then share their views on assisted living versus hospice care and how terrible it is to be a patient on a neurological floor. I am not at all sure how to respond to this group of people.

Needlessly Curious: When someone asks me why I am paralyzed more often than not I will ask the person why are they asking me that question. Once in a blue moon, the person will have an excellent reason for asking. The norm however is the stranger is idly curious. For these people I have no patience. I try to be polite and give of the body language that screams go away.

All of the above conversational experiences have a Goffmanesque quality. Anonymity is never possible when one has a significant and noticeable disability and you have the audacity to venture out in public. I must add a proviso here: one group of people do not engage me: other wheelchair users. Almost every time I use the train a fellow wheelchair user gets on and rarely do we get past the nod of the head stage. Oh but does that nod contain meaning! Sometimes I feel like a Knight. We are the hard ass survivors. We have endured. We have go through the social mill just to do the ordinary. It is with great pride that I am among my people. This has been the best move possible for one reason alone: the overwhelming sense of loneliness dissipates by the day. Now if the weather would turn cold I would be beside myself with joy.