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Monday, October 26, 2015

Crawling off a Plane

By now most people will have heard about D'Arcee Neal, who after a flight from San Francisco to Washington DC, decided to crawl off a plane after an extensive delay. Link to typical news story: Like any other person, D'Arcee Neal needed to use a bathroom after a long flight, hence his decision to crawl off the plane. For those who do not use a wheelchair, when a person such myself or D'Arcee Neal, fly the industry standard is simple. You are the very first person on the plane and the very last person off the plane. When I state you are the last person off the plane that means every single passenger has deplaned. The slow elderly lady, the family with four very young children, the sleeping man all the way in the back, the couple who are angry with each other with no interest in exiting. The only good thing I can say about the boarding process is that finding my luggage is easy. By the time I try to retrieve my bag all other passengers have long since departed the airport bags in hand. The rule of thumb I use is if every single thing goes as planned I will lose "only" an hour of my time. When I fly things rarely go right. In fact the norm is for things to go badly.

When I read about D'Arcee Neal, I had one question: why is this a news story. I have crawled off many airplanes. Every paralyzed man and woman I have known who can transfer independently have also crawled off an airplane. This happened to me and others more than once or twice. Was I furious when put in the position of being forced to crawl off the plane? You bet I was. I wrote letters, emails, and filed a complaint with the Department of Justice. I am far from alone. The National Council on Disability filed a report directed to President Obama. It is an exhaustive report. Link: Sections of the report made me weep, curse out loud, and reinforced I am far from alone. There is a systemic pattern of abuse and refusal on part of the airline industry to comply with the law. Despite the fact the law is firmly on the side of people with a disability unfettered access to something as simply getting on and off an airplane has gotten far worse in the post 9/11 era.

I can imagine those who do not use a wheelchair rolling your eyes and thinking how bad can it be? The answer is worse than you can imagine. For example, Robyn Powell, an attorney for the National Council on Disability travels often. In 2014 United Airlines, US Airways, Jet Blue and Southwest to one degree or another broke her wheelchair. Every part of my wheelchair has been broken by airlines: brakes have been severed off, upholstery ripped, front wheels wrecked, tires have been flattened and rear wheels bent, spokes gone missing, and most impressive was a badly cracked frame. In December of last year noted George Washington professor David Mitchell's wheelchair was dropped by US Airways on the tarmac in Hawaii. Another professor, There Pickens of Bates College, had her scooter damaged by multiple airlines. Keep i mind you cannot easily repair a wheelchair. It is not as thought he wheelchair repair store is around the corner. Simply getting a part can take weeks. The only thing that separates these  men and women from others is the fact they had the social supports to push back. Mitchell waged an aggressive media campaign and the airline agree to provide a replacement. In the ensuing weeks, Mitchell had no choice but to use an uncomfortable temporary replacement. I admire his efforts. Yes, he advocated on his own behalf but hopefully empowered others to do the same.

The law is very clear the rights of people with a disability extend to when they travel. The Air Carrier Access Act is excellent legislation that is ignored and violated on a daily basis. Link: How else does one explain away the thousands and thousands of complaints made each and every year by wheelchair users. Remarkably, this represents progress. Before the law was passed I was often deemed a "flight safety risk" and denied boarding. The risk people with a disability who use a wheelchair take every time they travel is significant. The response on the part of the airlines when they break a wheelchair or force you to crawl off a plane is always the same. You get a formal apology and a voucher to travel of about $200 or a similar amount for wheelchair repair work. When my son was a child I flew to Salt Lake City with him and my wheelchair was lost for many hours. I refused to get off the plane until my wheelchair was found hours later. We missed our connecting flight. The end result was a $600 travel voucher. When I used the voucher an airline employee asked how had the airline screwed up. I told him and his reply was "that happens all the time. You were smart not to deplane."

If the problem people who use a wheelchair encounter are so rampant why is nothing done? No one cares. People are too afraid to offer any sort of dissent once you get through the humiliation ritual known as airport screening performed by the TSA. The airline industry at large has been and remains hostile to any person that uses a wheelchair. Surely the inequality is addressed by industry insiders. Yes, some object. The best example is This website is a mixed bag at best. The website was founded by John Morris. It is a professional website and I assume Mr. Morris earns a living by traveling and is part of the travel industry. I have found very little useful information at and I perceive it as a site for industry insiders. If I have a  travel related question I prefer Scott Rains and his site the Rolling Rains Report. While far to quick to praise the travel industry when deeply annoyed Rains can be an insightful critic. He is simply to nice--a good character flaw.

Mr. Morris wrote "3 Takeaways from United Airlines' Disability Services Failure." Link: What Mr. Morris wrote was a mixture of fantasy and reality. He concluded the lessons are as follows: 1. Wheelchair users should expect to wait. 2. Planning ahead is important. 3. United Airlines should be praised. I will respond to each point.

On waiting: Mr. Morris appears to blame and question if D'Arcee Neal was patient enough. Mr. Morris also appears to suggest waiting a long time acceptable. He blames the gate agent for the failure of outsourced personal to appear at the gate. A critical factor was the plane landed at night and was the only flight of the day for United Airlines to and from D'Arcee Neal's destination. Here we have an insider in the industry, an insider with a disability, who politely questions the veracity of D'Arcee Neal experience and paints him as either naive or inpatient. I have been in this situation many times. Land late at night and this often is accompanied by an extended wait. If all goes well, within 30 minutes assistance should arrive. Like D'Arcee Neal, I begin to get agitated after waiting 30 minutes. That is 30 minutes after the entire plane has been empty or essentially 45 minutes after the plane has landed. Depending upon the reaction of ground personnel I will wait at least another 15 minutes or longer for someone to appear. After an hour I deem the wait a lost cause and crawl off the plane.  After being assured for well over an hour that some one will appear shortly I become skeptical and take matters in my own hands. Once in a while airline personnel will share my frustration. In rare instances non trained personnel will help me off the plane. The point here is that most people who use a wheelchair and fly regularly know the system. At some point we give up and accept the fact no one is going to appear. I suspect D'Arcee Neal reached his tolerance limit. The only useful information provided by Mr. Morris is expect to wait at best 30 minutes but be prepared to wait longer.

On planning ahead: Planning ahead should help. It does not. Planning ahead is an utter waist of time. Mr. Morris is simply wrong. When one travels the major variable is luck of the draw. In a day of traveling I have one flight where the crew was great. The next flight on the same airline the crew was rude and nasty. Generally speaking, some airline personnel are great; most are not. A person that uses a wheelchair represents one thing for ground personnel: work. Most ground personnel are indifferent to my existence. Most resent my existence and audacity to travel alone. Mr Morris suggests that on long flights people with a disability that use a wheelchair should dehydrate their bodies. I have done this for decades. On long flights I dehydrate myself 24 hours in advance of travel. If I do this now at my age I feel sick for days. But wait! Mr. Morris enters into fantasy land when he writes:

Using the onboard lavatory is an option, even if you cannot walk. Prior to travel, passengers can request that an aisle chair be stowed onboard for use during the flight. Flight attendants have been trained to help passengers to the restroom using the onboard aisle chair. This aisle chair cannot be used for boarding or deplaning, and cabin crew are restricted from assisting in this regard. If the passengers’ disability would prevent him/her from using the aircraft’s lavatory in this manner, they should consider booking an itinerary with an intermediate stop/connecting flight.
I burst out laughing when I read this. I have been paralyzed for 35+ years. The above is never going to happen. Never. The idea that flight personnel would be willing to assist is wildly wrong. This would take time and energy. It could interfere with beverage and food service. Even the possibility such an issue might arise makes it impossible. The idea an aisle chair is going to put on an aircraft is unrealistic. The suggestion that the flight crew have been trained to assist a person such as myself is pure fantasy as well. I have seen flight crews refuse to help elderly people enter a bathroom. I have seen flight crews be point blank rude to mothers with an infant and a small child during toilet training who needed a bit of help. There is also no chance your wheelchair will be stored anywhere but the belly of the aircraft with the luggage even thought this violates the law if one uses a folding wheelchair.
On praising United Airlines response: This stunned me. Praise an airline for violating the law? Really? Mr. Morris wrote: 
One of the flight attendants witnessed a violation of the ACAA and reported it to corporate. They reached out to the passenger and offered a proactive apology and $300. According to the CNN report, United has also suspended the manager on duty. That is truly unprecedented, and a game-changer. United Airlines sent a message to its employees that failures in the provision of services for disabled travelers will not be tolerated.
United did not respond in a typical way. Offering $300 immediately is $100 more than usual. Suspending the manager on duty is called finding a scape goat. The gate agent did his job exactly as required. It was not his fault the out sourced employees did not show up.  The suspension is not unprecedented. It was corporate self protection. Better to fire one person than be subject to an investigation by the Department of Justice.  The spin here is remarkable. 
In short, Mr. Morris gives an industry response. I am sure the nuts and bolts of what took place will be debated intensely among those interested in the experience of those that use a wheelchair and fly. This is what I learned: Mr. Morris praised United Airlines for paying off a passenger with $300 whose civil rights were violated.  Mr. Morris suggests people who use a wheelchair and fly keep their mouths shut and wait for an aisle chair to arrive. Mr. Morris implies D'Arcee Neal was impatient. Mr Morris thinks becoming dehydrated is a good idea. Mr. Morris thinks flight crews will store an aisle chair on board and are trained to help you into the restroom. Mr Morris thinks planning ahead will help. Mr. Morris is very wrong on all these points. 
Let me give those that use a wheelchair some practical advice. This coming from a man who advocates for others with a disability and has no ties to the travel industry. This advice is based on the gritty reality that the disabled person who is traveling is doing so with a severely limited budget given the unemployment rate among Americans with a disability is about 70% Expect problems to arise every time you fly. Expect airline personnel to be unhelpful. Expect to be demeaned by either airline personnel or flight crews. Expect a battle each and every time you fly. Be grateful when things go as planned. At a practical level I suggest the following:
Fight for the bulk head seat. You will have fought for a tiny amount of extra space but being in the first seat will enable to see or hear problems as they arise.
If you cannot get a bulk head seat, sit as far forward as possible. The less time spent in aisle chair the better. 
Those charged with physically helping you on and off the plane know little and sometimes have had no training. Many will not speak any English and are poorly trained and poorly paid (think sub minimum wage). Be assertive in the way you want to transfer.
Try not to take a flight during the morning or evening rush hours.
Try not to take a flight that lands late at night. Airports can be desolate places.
If making a connecting flight reserve at minimum two hours between flights. I never leave less than three hours. 
Carry a copy of the Air Carrier Access Act. A good app is available as are brochures in the airport. 
Be assertive. Be willing to say no and ask for the terminal resolution officer. Such a request can be used to assert your power when airline personnel are uncooperative.
Remove anything that might become detached from your wheelchair.
A well used wheelchair helps. Think duct tape. My wheelchair is rugged in the extreme but I have learned in recent years to make it look fragile. A piece of duct take here and there goes a long way if baggage handlers think it is on the verge of falling apart. 
Travel with a power chair at your own risk.  Given the weight and complexity of power chairs these modern marvels are at high risk for severe damage or complete destruction. 

One last point. If you think I have been too harsh on Mr. Morris I suggest you read his post about flying first class in which he wrote: In the event something goes wrong, greater attention might be paid to your needs if you are ticketed in a premium class of service. Link: This is an indication Mr. Morris has no idea of his privileged status. I suggest Mr. Morris spend more time flying on low profit domestic milk runs his crippled peers most likely experience.  

Sunday, October 25, 2015

On Space and Discrimination

Space, the final frontier. This is not about the famous line from Star Trek but rather about how disabled bodies are devalued. Our built environment is designed for people who are bipedal. This is reinforced every time I leave my home. Last weekend it was a lack of space between tables at a local diner. This is the norm in most owner operated restaurants--tables are far too close together for any person who uses a wheelchair to easily navigate. I get it; restaurants need to jam as many tables and chairs so they can be profitable. To avoid narrow aisles and over crowding I eat at many national and mediocre big box restaurants.  The national restaurant chains are more likely to adhere to the ADA. It is far more likely that I can use an accessible bathroom. It is also more likely I can access multiple tables without asking diners to move because the aisles are wider. The lack of space is something I think about every single time I go out to eat and attempt to access a larger venue. Restaurants, school auditoriums, civic centers, professional sports stadiums, small town theaters, courts, office buildings, airports, bus terminals, small hotels, bed and breakfast, and museums all too often present architectural barriers.

I often wonder what do designers think when wheelchair access is required. The human element is certainly not considered. Instead, I think too many designers perceive wheelchair access as a waste of space. Simply put, access is a problem and by extension those who use a wheelchair are a problem.  I am not a problem. The constructed environment is the problem. Just today a fellow member of the Not Dead Yet board, Carrie Ann Lucas, was deemed a problem. She attended a Colorado University football game and at one point risked arrest. Many huge stadiums are wheelchair  accessible in name only. My favorite example is the University of Michigan's Big House. Prior to its renovation in 2007 had about 88 handicapped seats in a stadium that held over 100,000 people. The university did everything it could not to comply with ADA. This is a repetitive pattern that has not abated.  

Attending most large sporting events is problematic. This weekend Carrie was deemed a fire code violation. Carrie is not a fire hazard. Carrie is a human being. People with a disability are often told they are a fire hazard. The litany of lines used to exclude are plentiful: "I am sorry you can't enter the building", "You cannot sit in the aisle", "You cannot wait there". As a young man I was often told "You cannot board this plane because you are a flight safety risk". In NYC I have been told "You cannot enter this restaurant", "You cannot get on the bus the lift is broken", "You cannot enter the school because no one has the keys to the accessible entrance". I quickly learned you cannot was followed by rationalizations such as "we are concerned for your health and safety". I know I am screwed when my health and welfare is a biped's primary concern. The most officious were pilots in uniform, largely male, and state with 100% certainty: "You are a flight safety hazard". NYC bus drivers were mean; school teachers were the most narrow minded. Virtually none acknowledged the fact I was a human being. Countless bipedal people think they have power over a person with a disability. I have had ushers at Madison Square Garden tell me where to sit in handicapped seating. Some of MSG employees have threatened to evict me because I am not exactly in the indicated location (I am referring to inches). This is merely an assertion of power. It has nothing to do with access and is instead a humiliation ritual.

My point is when disability enters the question of space bipedal people don't get it. All they know is they have power and we people with a disability do not. Hence Carrie's being deemed a fire hazard is worn out ploy used to exclude.

The law states large venues must have dispersed seating but this is often ignored. The norm is for handicapped seating to be jammed in the least desirable location. I call this the disability ghetto in honor of Harriet Mcbride Johnson. In Carrie's case handicapped seating is only available in the end zone behind the marching band. I cannot think of a worse location to watch a football game. Space for people with a disability to observe an event is not valued. Oh, handicapped seating exists but is consistently located in the worst possible location.

This was my view when my son graduated from college.

Handicapped parking accompanied by objectionable and inappropriate statement.

Stadium handicapped seating area.

Obviously people with a disability travel in packs and have no bipedal friends. I suppose we cripples also like to conglomerate in one location. The forced segregation of handicapped seating at large venues was addressed by the ADA. Dispersed seating is the law of the land. Dispersed seating is rare in my experience. Rare in that someone put thought in the seating area and the experience of attending an event. How does one enter and depart the venue? Are all public areas accessible if the patron wanted to walk around the venue? Are there enough toilets and perhaps a so called family bathroom. Do food vendor locations have a lower counter? Does one enter via elevator or lift? If so is lift filled with mops, buckets and trash?

It is the absence of thought that is the real problem. As my son told me long ago, no one cares about access. He is correct. Our space and existence is not valued. The ADA is an inconvenience. It is an unfunded federal mandate. Oh my, I hear that one often when dealing with people in health care industry. At issue is quality of life. I think no one should consider sitting in the center of a theatre a "luxury" Americans enjoy. These words were penned by Dave Hingsburger, a Canadian, at Rolling Around in My Head". His touching post made me think. Will I live to see the day when I can just go out. I am never able attend a public event without much thought. How can I get in? Will it be so crowded I will be miserable. How long will it take me to contact someone and purchase tickets? For example, I wanted to attend opening night for the Syracuse Crunch, the local AHL minor league hockey team. Unlike bipedal fans, I cannot order tickets on line. I must contact the box office that according to the website enables them to provide superior service. This supposedly superior service does not include returning three phone messages. Unable to contact the box office on four consecutive days I did not attend opening night. This passive discrimination is common. Like being deemed a fire hazard, the superior service is in fact a form of exclusion. In short, Carrie's experience hit a vein. I feel for here. I have been in her position many times and I know all too well that her memories of the game might be complicated by the knowledge her existence was a problem. Her life was not valued. She was supposed to enjoy a football game not be subject to social denigration.