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Saturday, December 27, 2014

Access Fail of the Year

I traveled a lot during the 2013/2014 academic year. I was on the West Coast not once but twice. I was in Boston, New York, City, Baltimore, Washington DC, Atlanta, Hartford, New Haven, and other cities. Travel for a a paralyzed man is never easy. Airline personnel are typically hostile to my presence. Problems abound each and virtually every time I fly. Hotel staff often appeared shocked a middle aged paralyzed man can travel alone and expect an accessible room to be ready upon arrival. Cabbies nationwide are nasty and more than once a cabbie sped by or wanted money to put my wheelchair in the trunk. Bus drivers as a group are better but lifts are supposedly broken or the driver has no idea how to tie down my wheelchair.  In short problems abound when I hit the road. I thought about this last night. My left hip woke me at 4:30AM. It feels like  hot poker has been placed on my hip. A pronounced pain is present. Not much can be done about my pain. Actually there is nothing I can do.  The only mediations that work dull my mind and put me in a stupor. I prefer the pain to a dulled mind. To pass time and wait for the sunrise I thought about the worst access problem I encountered. There was a high end hotel in Boston I stayed at. The bed in the accessible room was so high I could not make the transfer from my wheelchair onto the bed. The box spring was removed and I learned how important a box spring is that night. I did not sleep at all and as a result performed poorly at a public meeting. There was another hotel that accessible entrance was through the luggage room. Each and every time I went in or out about 50 bags had to be moved. There was a aisle chair to get on a plane that was so old and worn out that I had a person sit on it as I was concerned it could not hold my weight. There was a rent-a-car with hand controls that was lost and took two hours to find (it took longer to find the car than it took to fly from New York to Detroit). I checked into an accessible hotel room in San Diego that had so much furniture in it I could not get to the bed. I realized the hotel had used the room to store furniture. Ah, to be such a valued customer. To be fair I had a select number of good experiences. Select as in very few. The gold star for meeting and exceeding my expectations was the Red Roof Inn in Syracuse.

None of the above problems came close to the worst experience I had this year. The worst experience I had was in fact not that bad but is indicative of why access remains problematic. I skied a few times last winter.  Like other skiers, at the end of the day I am sore. If possible I like to swim after I ski. It relaxes and warms my body. Swimming is a real luxury in the winter after skiing. Typically, high end hotels have a pool. Somer resorts even have a heated pool outside. For me, this is the ultimate in luxury. It is very rare I can swim after skiing but I tried to last year. I skied near Syracuse and stayed in a mid level motel because it had a pool. I made the reservation solely because of the pool. I called and wrote prior to making the reservation. Yes, the pool is accessible. Yes, the lift is operating. The hotel staff was correct, the lift did operate.  Upon arrival I knew I was in trouble. The motel was a bit run down. It had clearly changed hands many times and the ramp to the front desk was way out of code and steep. I had a room on the first floor next to the pool. I walked into the room and the overwhelming scent of chlorine filled the room. There was no window to the outside. It was bad but would not kill me for one night. I was tired and had no interest in checking out and then finding a new motel in the dark. The pool was easy to find as it was next to my room. As I entered the pool room the smell of chlorine was over powering.  I could see the pool. It was big. It had a lift that worked. There were also 4 steps to get the pool level. I went to lobby and asked where is the accessible entrance to the pool. The employee had no idea. She called the manager. He came to the desk and told me he had no idea how I could get to the pool. He then asked "So, you cannot walk up the steps at all? We can carry wheelchair up the steps and then you can get back in. That is what we have done in the past". Sorry, but no I can not walk or stand. A puzzled look resulted in the manager calling the head of maintenance. This man appeared and he had no idea but suggested house keeping might know. At this point there is a small quorum of people. All are perplexed. All agree this is the most unusual request ever made. It is as though I am the only paralyzed person on earth. And here is the core issue: my "request" is individualized. Not one person present was making the leap in logic required that would negate this so called problem in the future. My request was not all about me but rather a disenfranchised class of people who are protected by the law. The law is called the Americans with Disability Act. They were breaking the law and they had no clue they were violating my civil rights.

 I was not expecting the people at the motel to understand the larger implications of a pool lift that was not accessible. They were just doing their job. At issue for me is the ingrained ignorance and social exclusion. Disability history and culture is simply not taught in secondary schools and is rarely part of a collegiate education. As a result, disability is rarely if ever framed as a matter of civil rights. Limited access and the social isolation it creates are blithely accepted as the norm. I am a problem that needs solving. Sorry, but no. I am not a problem. I am a sentient human being. I have the same rights as any other American. I have the same rights as any other guest that checked into the motel. What took place at the motel was typical. Access problems abound. I cannot travel without encountering barriers social and physical. I am well aware that the way I approach barriers that abound is complex for I am not a single individual. I am the very representation of all things disability. I am a token, a memorable person that represents all people with a disability. If I get angry all men that use a wheelchair are mad at the world. If I am firm and forthright I am a difficult customer. People, typical bipedal people, do not get it and some days I think they do want to get it. My experiences are far from unique. Liz Henry wrote about the lack of accessibility at technology conferences. Like me, she has been going to conferences regularly for many years. Has progress been made and is disability inclusion valued? In a word no. Henry wrote about a typical experience, one that every person who uses a wheelchair has had:

I ask a hotel employee. I ask another conference goer. I find a conference organizer. The hotel people go and find other hotel people. There is a hubbub. Facilities people with walkie-talkies show up. I am polite and not angry, over and over. Everyone stands around wondering what to do. There is a freight elevator that is locked that you can only get to from the back alley around an enormous city block. I end up in the basement. There is a tiny airlock-style lift but it’s locked and no one is sure who has the key. I demand the key. Consternation. No one has ever thought about this, ever, in the history of the known universe!
I often INVITE able-bodied strangers and friends alike to find, and ride, the locked, blocked, garbage-filled elevators in the basement with me; to stay by my side and witness how it goes. I have to laugh all the way through it. It’s more than inconvenience. Crappy access says, like a slap in the face, that we aren’t wanted and no one gives a fuck.
I had to laugh when I read Henry. I get a perverse sort of pleasure when typical bipedal friends get an inkling to what my life is like. I often joke, welcome to the land of disability. Locked elevators and bathrooms abound. Elevators filled with trash and cleaning products are common, obscure entrances to buildings and other access adventure exist; for example lots of trips through tunnels when navigating universities and huge conference centers. I regularly see the worst parts of some of the best buildings. In a way it is interesting but there is no question the lack of access is a slap in the face. This metaphoric slap is fueled by ignorance and a lack of information. Most venues I visit all state they are accessible. To a degree this is correct. Theoretically one can navigate freely but no one know how to get from the lobby area to the bar, pool, health club or restaurant. No one knows if there is an accessible podium where I will be speaking. No one knows the nearest bathroom to the room I will be speaking in is on a different floor and requires the use of an elevator. No one knows if the nearest subway or bus stop is accessible. No one knows if the airport shuttle bus is accessible. No one knows if the pool has a lift. No one knows where the elevator is when I encounter a sign that points down to an impressive stairway to where I want to go. Sure you can get in--sort of. Like Henry, what I have learned if there is an information black out "that tells me right away I'm heading for a world of alienation, in a place where no one has put thought into accessibility".

What Henry describes is exactly what I have experienced the last three times I have attended the American Society of Bioethics and Humanities (ASBH) annual meetings. There is no disability  diversity. I rarely if ever encounter another scholar with disability. There is a good reason for this. It is no different from the worst access fail I described above. Scholars with a disability are alienated for good reason. Staff organizing the ASBH meetings treat access issues as an individual problem. Any input from scholars with a disability is rejected. So called access "problems" would not arise if a modicum of thought was spent on access--something I have thought about for nearly 40 years. Some professional organizations think about access issues, the ASBH does not. It never has and I doubt it ever will. The utter lack of interest in access at ASBH meetings is by far the worst of any professional association I have ever been involved with. No information is provided about access. How about a wheelchair route map to the ASBH registration desk? Nope. A list of accessible taxis and bus routes? Nope. Signs pointing out accessible paths to frequently used locations? Nope. Does anyone know how to unlock elevators or bathrooms or is there a contact person available? Nope. Are distances included in maps? Nope. Are microphones lower so wheelchair users such as myself can ask a question? Nope. Are ASL interpreters and CART provided? Sometime yes, sometimes no; and if provided is the deaf scholar followed by ASBH staffers to insure they are getting maximum bang for the buck? Yes.  Are conference materials provided in a screen readable format? Nope. Is the app for the conference screen readable? Nope. Are a list of nearby accessible restaurants made available? Nope. The list goes on and on. Not one but two ASBH presidential task forces on disability have been created. I was part of one. Hundreds of emails were exchanged. Telephone conferences were held. Were concrete suggestions enacted? Nope. Were the task forces on disability used to exhaust scholars that wanted to be involved in an effort to make them give up in frustration? I do not know. Here is what I do know: if I am the only person present at a conference using a wheelchair I am mad. I am mad because I know access is not valued. I know without question the professional association is doing something very wrong. Here is a radical idea for the ASBH: stop complaining about cost of CART, ASL interpreters and how access is the hotels problem and that the ADA does not apply. Please just stop, think and do something to be inclusive. Demonstrate that scholars with a disability are valued members of the organization. The ASBH is failing and has failed for quite some time to be inclusive to scholars with a disability. Within the small population of scholars with a disability when access issues and the ASBH are mentioned there is often stony silence and an annoyed roll of the eyes. More than once I have heard "That organization sucks in terms of disability access. I never go, its just not worth the hassle". I am perplexed. No one at the ASBH wakes up in the morning and thinks lets alienate scholars with a disability so they will not attend the meetings yet this is exactly what they are doing. Thoughts that come to mind at 4:30AM are often deeply embedded. My alienation is as heart felt as it is unwanted and unnecessary.

Sunday, December 21, 2014

Mortality: It's About Living

Brittany Maynard has quietly slipped away from the media's attention. For me and many others opposed to assisted suicide this is a great relief. I spent far too much time talking, thinking and writing about Maynard and the slick ad campaign waged by Compassion and Choices. I wish her family well as they endure the grieving process. I know all too well grieving the death of someone you loved is a never ending source of sorrow. I have been pondering end of life issues the last few weeks. Winter is settling in where I live. The days are short and the nights are long. It is cold and crisp. The end of the year is near and this always makes me retrospective. I miss my son who lives in Seattle and he will be celebrating his first adult Christmas away from home. I have been looking at many cherished photos of him when he was a little boy. He was a cute kid but a royal pain in the ass for his secondary school teachers to handle. Think smart and subversive and that is my son. The apple does not fall far from the tree. I am happy to take my share of the blame or credit and this has me thinking. What sort of job did I do as a father? What will he remember? Will he remember how I lived or died?

Mortality is something feared but ever so much a part of life. Ashes to ashes dust to dust--famous poetic words that do not appear in the Bible. The phrase appeared in the Book of Common Prayers. Oh, its biblical for sure. The entire phrase reads as follows:

In sure and certain hope of the resurrection to eternal life through our Lord Jesus Christ, we commend tp Almighty God our brother [name]; and we commit his body to the ground; earth to earth; ashes to ashes, dust to dust. The Lord bless him and keep him, the Lord make his face shine upon him and be gracious unto him and give him peace. Amen. 

Peace, graciousness, and tranquility. I wish this for all those approaching the end of life. Those that advocate for so called death with dignity legislation or the legalization of physician assisted suicide make me shake my head in wonder. Rather than being paragons of virtue, I find those that claim "My life, my choice my death narcissistic if not dangerous. There are just too many my's the the4 Compassion and Choices tag line. Life is not about death. Life is about living. Life is about squeezing out every ounce of energy from our body. Life is about living to the fullest from the second we are  born to the second we die. The method of our death means little. Here I refer to the physicisal process of death which is typically a long slow arduous decline to oblivion. I for one do not want to be remembered for how I die but rather how I live. Sadly, Maynard will be remembered for how she died. I find this tragic. No one should be remembered for the way they died. It is a tiny part of one's life and typically not within our control. Living is the hard part and death should celebrate a life led. Maynard do not need to end her life as she did. Other options existed. Other options existed for others who have brain cancer. While Maynard's end of life story went viral another story was largely ignored. Adam Purmort lived and died in Minneapolis. He was married and an art director. He had a son. He also had brain cancer and died. He and his wife Nora created a website My Husbands Tumor. Link to the archive:  Purmort must have been a fun man to hang around with. I loved his obituary in the Star Tribune. No tears, not dull, just irreverent:

Purmort, Aaron Joseph age 35, died peacefully at home on November 25 after complications from a radioactive spider bite that led to years of crime-fighting and a years long battle with a nefarious criminal named Cancer, who has plagued our society for far too long. Civilians will recognize him best as Spider-Man, and thank him for his many years of service protecting our city. His family knew him only as a kind and mild-mannered Art Director, a designer of websites and t-shirts, and concert posters who always had the right cardigan and the right thing to say (even if it was wildly inappropriate). Aaron was known for his long, entertaining stories, which he loved to repeat often. In high school, he was in the band The Asparagus Children, which reached critical acclaim in the northern suburbs. As an adult, he graduated from the College of Visual Arts (which also died an untimely death recently) and worked in several agencies around Minneapolis, settling in as an Interactive Associate Creative Director at Colle + McVoy. Aaron was a comic book aficionado, a pop-culture encyclopedia and always the most fun person at any party. He is survived by his parents Bill and Kim Kuhlmeyer, father Mark Purmort (Patricia, Autumn, Aly), sisters Erika and Nicole, first wife Gwen Stefani, current wife Nora and their son Ralph, who will grow up to avenge his father's untimely death. A service will be held on December 3, 2014 at Shelter Studios, 721 Harding St. NE, Mpls 55413 at 6 pm.

When Purmort and his wife wrote the above they laughed hard and cried harder. But they had fun and celebrated a life well lived. When Purmort died his wife posted the below on line. I dare you to read this without tearing up:

It’s over.
It wasn’t a war or a fight. Those things have rules. This was more like Aaron getting in the ring with the Mohammed Ali of cancers, and smiling for round after round after he got his teeth knocked out and his face rearranged. 
It ended today at 2:43pm, in the middle of a run-on sentence, my head on his heart and my arms around him in a hospital bed built for one, but perfect for the two of us. We’ve spent the last three years in a variety of hospital beds. We were engaged in the light of a heart rate monitor, snuggled together just feet from his mother on the night of his first seizure. He let me sleep next to him before brain surgeries, even when I was 8 months pregnant and my belly pushed on his IV cords. Our Ralph crawled for the first time in a bed on the oncology floor, desperate to get to the laptop where we were watching The Sopranos after Aaron’s infusion. We snoozed and watched countless movies and TV shows in those little beds, which somehow never felt too small for our tall bodies. Yesterday I spent hours in bed with him, playing songs we loved and remembering stories from our relationship, thanking him for everything he brought to my life and letting him know it was okay to go and chill in the other world with our baby and my father.Today we took our last nap in our last hospital bed, in our home, under a blanket that Megan sewed for our wedding. 
It’s okay. It’s okay. Thank you. We had so many good years. Not enough, but really good years. You were so good. You were so good to me. I love you. I’ll keep you in my heart, forever. It’s okay. He breathed out, and I readied for the sharp inhale that would follow 8-10 seconds later, rattling through his body. It never came. That’s how it ends. One quiet second.He was here, and then he was gone. It was tangible, this sudden hole that appeared in the center of the universe when he left his body to become everything all around me, just as he promised to do.But we are stardust, and our bodies are just vessels to help us navigate this earth and to eat Taco Bell. I laid with his body and soaked in his warmth. We dressed him in head to toe J.Crew and his best Nike Dunks. I didn’t even know they cremated you with your clothes, but he’ll be all mixed together with some of his favorite things and the finer things were very important to this man. 
Before his first surgery, I stole a marking pen from the surgeon and drew a small heart on his hand. Not so much to reassure him, but to reassure myself. Tonight, I found the same one deep in an old  make up and at the urging of his mother, left the same small heart for him with the same stolen marker. I know what Aaron always knew: it might not be true right this second, but it’s going to be okay.
I admire this man. He did not turn his end of life into a made for media event. He and his wife celebrated his life. They had fun writing an obituary. Really, who does this? Few have this sort of wild creativity. What struck me the most though, was that Purmort's son will be able to go back and read about how his parents met, what music he liked, his work life, and how how he died. His death that was not funeral dirge but celebration. Purmort was the antithesis of Maynard. While his end of life experience got some media attention it was dwarfed by Maynard. Everyone had an opinion about Maynard--positive and negative. Purmort made people laugh and think. He enjoyed life to the fullest and died in the arms of his wife. He led a life worth living. A life worth living. That is what people should be remembered for.