On Ableism and 'Trouble Luggage"

Travel for people with a disability is rarely routine. I am acutely aware of my disability every time I travel. No matter how extensively I prepare, problems abound every time I use a plane or train and stay in a hotel or motel. My good friend Stephen Kuusisto wrote an outstanding blog the other day, "Blindness and Blogging". Link: http://www.stephenkuusisto.com/uncategorized/blindness-and-blogging Kuusisto used (invented) a term I have never heard of: travel luggage. Every person with a disability that exits their front door has luggage--none of the luggage is good nor desired. The luggage Kuusisto refers to is the stigma, segregation, disrespect, skewed social interaction, power imbalance, ignorance and complete lack of respect for people with a disability. We people with a disability are firmly planted in the "special needs" category. Special here means inferior sub standard service. For me, my wheelchair and my presence is an unwanted problem that must be navigated. Note I wrote my wheelchair. I have long known a wheelchair is a portable social isolation unit. Few people see me, the human being, using my wheelchair. My invisibility cloak or portable social isolation unit was in over drive when I took an extended weekend break in Boston. I met a wonderful scholar whose work I deeply respect and hopefully have formed a new friendship. In short, it was a great trip.

Here is the proverbial but. Navigating the city of Boston is difficult and easy. Remarkably the subway works really well. Like all cities, curb cuts are hit and miss. A curb cut can exist on one one side of a road but not the other. Ramps to nowhere abound. Accessible entrances are often remote or obscure. The bipedal hordes that surround me can be polite and friendly or dense in the extreme. News flash: wheelchairs do not move laterally. And for those bipedal people standing in the middle of a curb cut--just because you choose to ignore my existence does not mean I cease to exist and will in fact need to get up the curb cut being blocked by your supposedly superior body. Oh I could go on a for pages but you get the point--barriers, social and physical abound. What gets on my nerves are hotels. I stayed at the Hilton Hotel in Back Bay. It is a very good hotel. The Hilton staff were excellent, responsive, and extremely polite. The room I stayed in was well appointed and had a good view. Again, a but. Like many hotels, the Hilton had what I call faux access. Remember, I am a paying guest. My money should go as far as the bipedal people that are paying the same rate. So what is faux access?

Room: As is the norm, the room had too much furniture. The room I requested had a roll in shower and two beds. The bathroom was well planned out and the shower bench was padded--a rare luxury. The problem is that any man or woman using a power wheelchair or scooter could not enter the room. The room entrance was far too narrow and blocked by a bed and closet. I could barely get by and I use about the narrowest wheelchair marketed for an adult. This room is most likely going to be requested by a person using a power chair or scooter. These guests can be told all about the wonderfully accessible bathroom they cannot access. They can also not open or close a window nor adjust the thermostat placed far too high. Of course this is not a problem since they cannot get in the room itself.

Diamond Club: This is the small room where preferred guests can get a free breakfast and drinks and snacks in the evening. The club is only accessible via a wheelchair lift. The lift was the oldest one I have seen in decades and reminds me of the iffy lifts I used in 1979. It took three men to get the lift to work. The lift had no safety features and without visual awareness of where ones feet were an injury was a real possibility. I was able to use the lift only because of my slender profile. Not impressed and somewhat concerned about how I would be able to exit I entered the Diamond club. Cramped with too much furniture I quickly noted the buffet table was impossibly high to access. In fact it was so high I could not see what was in the warming trays. To get coffee, I would have to move an occupied table. To eat I would need to seek assistance. As for the furniture, there was no table I could access.  As is the rage these days, the tables were tall and impossible to use. No complimentary breakfast or coffee for me.

Pool: I like to swim when I travel. I rarely swim when I travel. The hotels I stay in often have a pool I cannot access. The Hilton had a pool lift. They even had a modern wheelchair lift so I could access the exercise room and pool area--a vast improvement over the Diamond Club lift.  But now we come to the wheelchair pool lift. It was pushed into a corner. Access to the lift was not possible however. The lift was pushed into the corner with power motor facing out. It needed to be unplugged, pulled backwards the width of the pool, turned around and then pushed back and plugged back in. I could not physically do this. No employee was in sight. The pool was small and simply not worth the effort.  No swimming of me.

I get the above sounds petty. I get a giant amount of privilege exists. I can afford to travel and the vast majority of my crippled brethren cannot. I should consider myself lucky. This doe not negate the point I am trying to make--a profound disconnect exists when my experience is compared others without a disability. The Hilton's primary concern is to insure it meets the letter of the law. The hotel is compliant with the ADA. Each instance above could be ameliorated via a reasonable accommodation. I could have requested hotel staff assist me getting in and out of the Diamond Club lift. A staff member could have assisted me with breakfast. I could have swam. A staff member could have assisted me. That is a lot of assistance that directly undermines my autonomy.  Access is ever so close but in reality illusive.  The divide between reality as I experience it and those that are bipedal experience it are two very different social experiences. We have come a long way in the 25 years since the ADA was passed into law. The barrier today is not the law but rather the complete lack of a social mandate for the law. The Hilton did their job. They met the letter of the law. Would it hurt the Hilton to consult with an ADA coordinator? Better yet, identify valued guests with a disability and ask them how was access at our hotel? Perhaps each hotel could have one or two employees do a walk through the accessible rooms and access services? Perhaps a hotel employee could get ADA training as part of their job? The possibilities are endless. The desire is non existent. I call this lack of desire willing ignorance and ableism.