Search This Blog

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: https://aroundthetoilet.files.wordpress.com/2018/05/around-the-toilet-report-final-1.pdf 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.