We Alone Are Not Enough

I caught a glimpse yesterday of something going on with well-known disability activist and scholar Mia Mingus, something about having to do with air travel. I didn’t dig into it though until this afternoon.

It takes a lot really of nasty ableism to truly piss me off. This is partly because I’ve had disabilities all of my life, partly because of 20+ years in the Independent Living Movement, and partly from my more recent blogging on the subject.

It takes something really outrageous to shock me, and that sort of blunts my outrage.

But this kind of thing cuts through all the world-weary cynicism. It’s so stupid, so humiliating, and so unnecessary. Read all about what happened in this collection of Tweets, assembled by Alice Wong of the Disability Visibility Project. I’ll have a bit more to say at the bottom.

There’s a lot in these Tweets that goes beyond disability issues into even more fundamental issues of racism and state power. I feel a little less qualified to comment on those aspects, thought they are definitely there, and the incident itself carries all of the key hallmarks of ableism.

First there's the institutionalized stupidity of a system that probably has safeguards to prevent this kind of discriminatory targeting, but either can’t or won’t actually implement them. I suspect the individuals involved have far too much power and discretion to act on their personal views of disability, (or whatever else bugs them in the moment), and not enough oversight.

Second, there is the fact that people who must meet far more disabled people than most people do in their jobs still think a gel seat cushion in a wheelchair is some kind of weird, mysterious, unknown thing. This is an airport in Oakland, California, associated with one of the most disability-aware metropolitan areas in the United States. You’d think they would have met travelers in wheelchairs with gel cushions before. They are pretty standard components of wheelchairs for people who use them long-term.

Third, I really think a big part of this is what Mia mentioned about experiencing much less hassle when she travels with others. People in wheelchairs especially, are informally required to have someone else there to sort of “vouch” for them, in any situation where authorities are involved or observing. This is a fundamental part of ableism … we alone are not sufficient. We can be admirable, inspiring, plucky, resourceful … but someone’s always wondering where our keeper is, you know?

Now, I have never experienced anything like this, and I travel almost exclusively alone. However, I only fly about once a year, maybe. And for the last ten years or so, I have packed my ventilator … a medium-sized box of of indeterminate purpose with electronics involved … in a suitcase. I check it as luggage. I usually find one of those TSA slips in the case that says someone has opened it and snooped around, but it's never caused a problem. But a gel cushion seems pretty harmless to me, too. Why did they pick on that?

And why didn’t they just accept Mia’s explanation? Again, we go back to the fundamental issue … we alone are not enough.

Who is with you? Is there someone here who can help you? If you're this dependent on your equipment, wouldn't it be smarter to travel with someone? It's not our job to solve your problems you know!

I hope the TSA is forced to give a public explanation for how they treated Mia and what they did to her property. I hope they reimbursed her very quickly for her substantial financial loss. An unequivocal directive that wheelchair cushions are fine would be good, too. And, sad to say, a firing or two may be in order. Institutional ableism aside, sometimes it really does come down to an individual with too much power, who just won't budge in their thinking.

----------

[Facebook] [Twitter] [Podcast] [Support]

Throwback Thursday

A year ago in Disability Thinking:

Accessibility Road Trip Followup.

----------

[Facebook] [Twitter] [Podcast]

Why (Wheelchair Users) Can't Have Nice Things

Complaint: Commuter buses yanked disabled access for bar seating

Kristen V. Brown, San Francisco Chronicle - April 18, 2015

There are probably people who understand the value of accessibility, but don't realize just how galling this particular story is for wheelchair users. It’s annoying enough when a new business “forgets" to factor in accessibility, then begs forgiveness because they’re new, just starting out, struggling, whatever. But this is an intentionally high-end company that actually bought some wheelchair accessible buses, then intentionally removed the accessibility features. I don’t think they did so because they didn’t want wheelchair users to ride their buses. I suspect it really was all about space. Where else were they supposed to put those juice bars?

I think there’s also some unconscious ableism at work here. Underneath whatever legal calculations the company might have made, gambling on their interpretation of the ADA, I’ll bet there were at least a few thoughts along the lines of: “How many wheelchair users are going to want to take an expensive, luxury bus to work anyway?” Because disabled people don't get cool, high-salary jobs, and we don’t really care about nice things, even if they do reek a bit of embarrassing hipsterism.

Of course, it’s also entirely possible that at least one person at the company thought, maybe for a few seconds: “Wheelchairs take up too much space anyway …” Seriously, don’t you think that thought went through somebody’s mind, even if they never put it into words?

I usually don’t wish failure on startup businesses. However, I hope for the sake of precedent that what the company did is found to be an ADA violation, and that this sets off a chain reaction leading the whole enterprise to go bust. I’m sure the resulting damage to the Bay Area economy will be quite … limited.

----------

[Facebook] [Twitter] [Podcast]

"20 States On Wheels" Update

20 States On Wheels

I decided to check in on the 20 States On Wheels project … four college students, one of whom uses a wheelchair, traveling from San Francisco to Boston and blogging about the accessibility they find, or don’t find, along the way. Today they are in Denver!

It looks like they have found a fair amount of full accessibility so far, with the biggest problems being when promised accessibility and accommodations fail to materialize. This seems most notable with car rental and hotel reservations. Restaurants and tourist attractions seem to be mostly accessible and accommodating.

That all sounds familiar to me, and highlights one of the best aspects of architectural accessibility. For the most part, a physically accessible feature can't disappoint. People frequently do, as do their policies and practices.

Browse the blog. The group has posted lots of great photos, along with descriptions of their accessibility experiences.

Handicapped Parking

Do they REALLY need disabled parking?

Chelsea Rarrick, WTVR Channel 6 Richmond, VA - July 9, 2014

This looks like a fairly typical local news story about disabled / handicapped parking … maybe a bit better than usual. It seems like it covers two sides of the same coin … people who misuse handicapped parking permits, and people who wrongly assume that any driver who walks away from a car parked in a handicapped spot must be misusing a handicapped parking permit.

One thing I think is missing from discussions about handicapped parking is that there are several distinct ways it benefits disabled people.

The most obvious is that it allows us to park closer to the entrance of the place we are visiting, so we don’t have to wheel or walk as far as we would if we had to park further away. For some, it is important because the way we move is harder than walking. For others, it’s that we are limited by pain or endurance in how far we can walk without a significant rest.

A somewhat different benefit is that when handicapped spaces are present, it reduces the chance that we won’t find anywhere at all to park. For many of us, just going out is big production that consumes a lot of physical and mental energy. It’s hard to explain to non-disabled people how demoralizing it is to get yourself out to your car, drive to the place you need to visit, and then find that because there is no parking available of any kind, you will have to go home again empty handed. And, your will probably have to do it all over again soon, because you still have those errands to finish. This is less likely to happen if the right number of handicapped spaces are properly placed and marked.

Knowing that handicapped parking spaces are available gives us added assurance that we can go out and successfully complete our errands, without becoming so exhausted that we can’t move for days. By extension then, if handicapped parking were to be eliminated somehow, or if a disabled person lost their permit for some reason, it would cause us to go out less, and be more “home bound” than necessary.

Put another way, handicapped parking gives both practical and theoretical benefits. It makes a more active life physically possible, and psychologically a little less scary.

So, yes, we REALLY DO need disabled parking.

Accessibility Road Trip Followup

About a month ago, I did a blog post about a cross-country trip some college students were planning for this summer, the purpose of which is to document accessibility at hotels and restaurants they encounter on their trip. The group appears to be led by Kunho Kim, who is a paraplegic wheelchair user. All of the group are Harvard students.

I just checked back with the project’s beautiful website, and it appears that they are close to raising their $6,000 goal to pay for the trip. They have also posted their first accessibility review … of a local bed & breakfast. It looks like they will be posting some practice reviews before leaving for their trip.

It is all very nicely done, and the website is very pleasant to visit and browse. I hope that they develop a bit more of a strict rating system, so that it is easier to compare the places they review. Also, I hope they review a variety of different places, with different styles and price levels, including both chain establishments and independently owned motels and restaurants. I do like that their B&B review included aspects of how the staff responded to their accessibility needs.

It seems like a fun and worthwhile project, and definitely worth checking up on over the course of the summer. Plus, imagine how great it would be if this became a trend ... disabled college students road-tripping to document accessibility!

The website is: 20 States On Wheels.

Best Summer Vacation Plan

wheelchairproject2014, Wheelchair America Road Trip

This is a great idea. Four college students … at least one of whom is a wheelchair user ... driving across the United States, coast to coast, documenting accessibility in 20 cities. I can’t wait to read more about their plans. How are they going to decide what facilities to check? Are they going to use an accessibility mapping app, like AbleRoad or AXSMap? What sort of vehicle will they be driving?

Here is a brief video describing the trip, also posted on the project website.

I willl be following their progress!

Air Travel Tips

AmputeeOT's video this week is about traveling by air as an amputee. As usual, she has a very optimistic outlook on things. Travel for people with physical disabilities doesn't always go smoothly, even when you do plan ahead. At the same time, she's pretty realistic, and everything she says makes good sense. And anyway, this blog sometimes gets a bit bleak, so I like to balance it out with some lighter stuff once in awhile.

Photo Of The Day

From the Living with Disability Tumblr blog.

On The Road

I'm in St. Louis for a class on grant writing. There are accessibility and accommodation stories to tell when I have time.

Wedding Toast

I attended a wedding yesterday of a fantastic young man and woman … the bride being my brother's wife's daughter. The ceremony and reception were both held at a fairly high-end Vermont resort, and apart from the fact that the festivities themselves were beautiful, the accessibility and accommodations were really very good.

In fact, there's not a whole lot to report, except for some small details so I'll just bullet point them:

• When I checked in to get my hotel room on Thursday, the desk clerk showed me on a facility map where my room would be and how I could drive my car around to reach it. He said he'd have someone meet me over there to get my luggage out of my car. Before I could even get halfway there, the guy flagged me down and said they had reassigned my room to a location they figured would be easier for me during my stay … closer to the action so to speak. Plus, the room as an upgrade, for which they did not charge me. They did this without asking me. People with disabilities usually say that people should ask us before diving in to help, but in this case, I appreciated it.

• There were a lot of small changes in level throughout the resort, but they all were either without steps at all, or steps with accompanying ramps.

• The only bona fide barrier I saw was at the place where guests exited the reception hall to walk across to where the outdoor ceremony was held. There were three steps. I don't especially need a ramp for just a couple of steps, but I did notice it. The steps were pretty shallow though, and I'll bet that they have a temporary ramp available if alerted in advance.

• The bride's grandmother was there using a wheelchair most of the time. She and hurt her knee recently. From where I was sitting for the ceremony, I couldn't see how she handled the steps, and I think she may even have walked "down the aisle" on someone's arm. I might have been offended on her behalf if she were a full-time wheelchair user, but somehow the fact that her impairment was temporary made me think differently about it. For a temporarily disabled person, I guess I'm more understanding of the desire to shed the trappings of impairment and make a "normal" appearance in situations where everyone is watching.

• I didn't notice any ableist social blunders at all, from either the guests or the staff.

I really think that when it comes to big, complex social events like weddings, a relative lack of small annoyances has just as much positive effect as the absence of major barriers and offenses.

Change of Plan ...

I decided not to go to Montreal today. As the kids these days say, I'm not feelin' it. Everyone has that feeling sometimes, but I think it's probably a more frequent feeling for people with disabilities. Even fun stuff requires extra layers of planning and gallons of additional energy, and some days it just doesn't seem worth it. Sometimes that's depressing, but quite often it isn't at all. When I can easily envision a really pleasant, rewarding day doing something less taxing than what I'd originally planned, I'll make the last-minute change. It also helps when the original plan was solo, so calling it off or postponing doesn't affect anyone else.

Maybe I'll go sometime next week, on a weekday when the border isn't as busy and there might be fewer other tourists about.

"Pilgrimage"

Photo by Laslovarga via Wikimedia Commons

I'm planning a day trip to Montreal, Quebec tomorrow, and I'll probably visit St. Joseph's Oratory.

St. Joseph's Oratory is a massive domed basilica, built near the top of Mount Royal, smack in the middle of the Island of Montreal. The dome dominates the Montreal Skyline, so much so that when I was a kid, my parents used to offer a quarter to the first person to spot it on the horizon whenever we drove up to Montreal. I'll check for sure tomorrow, but I'd guess that the dome is first visible from about 15 miles away. Wikipedia tells me that St. Joseph's was built between 1904 and 1967, so it was already retro from the day the first brick was laid.

St. Joseph's has always been a pilgrimage site, where according to legend, people with disabilities are healed after climbing … or crawling … up the basilica's long approaching steps. Inside, there is a wall covered with a display of hundreds of crutches supposedly left by pilgrims after their miracle cures. It's kind of a garish, ridiculous-seeming idea, I suspect even for many Catholics (which I am not). But the story's cheese factor is lessened by the basilica's outside grandeur, and most of all by its interior, which is quiet, austere, and haunting … the very opposite of garish. It is the only place of worship that I have ever been in that has come close to spiritualizing my skeptical, materialist heart.

I will NOT be attempting an actual pilgrimage up those steps. If there's some sort of rack inside that would straighten my back and make me taller, I'll give it some thought.

St. Joseph's Oratory

Post-Trip Reviews

Thumbs Up

• Chairs and benches evenly distributed all around airport corridors, so you're never more than a few strides away from a place to rest.
• Even if you didn't ask for wheelchair assistance in advance, you can ask for it when you get off the plane and they'll give it to you without extensive questions or excessive waiting.
• Moving sidewalks.

Thumbs Down

• Airports where instead of a jetway, you have to board a shuttle bus that takes you to or from your plane.
• Weird gate numbering systems, wherein Gate 25 and 35 are at opposite ends of the airport instead of being, you know, ten gates down the same concourse from each other.
• Wheelchair handling. I've seen baggage handlers try to push a large, expensive electric wheelchair, even though its wheels are obviously locked and the tires are studdering and scraping across the tarmac.

Not Sure What To Think

• TSA doing a full-body pat search on a visibly disabled person, specifically, me. Basically, I figure it's fair play, and no more stupid than any other aspects of "security theater." Plus, the guy doing it was exceedingly polite and respectful.

Air Travel

Air travel is a hugely revealing experience for people with disabilities. It simultaneously grants us incredible mobility, and throws our incapacities and dependencies into stark relief.

Depending on the type and degree of your disability, and no matter what airline websites and federal regulations say, it can be nearly impossible to get your body onto a passenger aircraft, and entirely impossible to do so with dignity. The boarding, seating, and de-boarding process even divides people with disabilities from each other; quadriplegics have a far worse time than paraplegics, those of us who walk … even unsteadily … find getting on and off the plane to be the easiest part of the whole trip. In fact, as a walker myself, my relative facility for getting on and off a plane efficiently makes me feel more physically capable than I feel on most ordinary days.

Photo from airliners.net

If you do need help though, at any stage of the air travel process, you have to come to terms with true helplessness. You have virtually no control over what will happen. Most likely, things will go mostly okay. There are reasonable regulations, and most people mean well. You probably won't die, or be seriously injured. But whatever happens all you can do is put your faith in "the system". Even skilled advocacy may not help. The social rules you live with on ordinary days don't fully apply. The strategies you normally use to cope and carve out areas of independence and choice don't apply in the usual ways. Even non-disabled people who fly regularly know this. It's why so many people of all abilities dread air travel. As a person with a disability, your ability to give up and say "screw you guys, I'm going home" is even more limited.

This is one of those situations where attitude really does make a difference. If you go into air travel thinking that things ought to work the way they're supposed to work, then you'll have a terrible experience, not just physically but psychologically. On the other hand, if you enter air travel world with the understanding that it is almost like a different culture you're entering, then you may be able to protect your self appropriately, get where you're going, and roll with the punches in terms of changing plans and expectations. Plan ahead, for sure. But assume that what actually happens on the day will be different.

As an aside, I've often thought that non-disabled people who want to understand what everyday life is like for people with disabilities should just think about the last time they took a complicated airplane journey. That's what it's like most people with disabilities run our everyday errands.

About the only tool that's about as useful in air travel world as it is in the regular world is money. The Air Carriers Act is an important law and I'd fight if it were ever under threat. What enables me to fly despite my disabilities is mainly a wad of $5 bills to give to people who will help me get me and my stuff through all those interim steps that others take mostly for granted. Car to terminal, to baggage check-in, to a gate that may be steps away or a mile away. And reverse on the other end. $5 bills can really iron out a lot of the wrinkles of traveling with a disability.

Of course, the ultimate liberation is that, ordeal or not, if you can fly at all, you end up just as much in a whole different city … or a whole different continent … as all the non-disabled passengers you flew with. Everybody who flies knows what this hyper-mobility feels like. People with physical disabilities, I think, feel it more keenly.

All of which is on my mind because I'm traveling to North Carolina tomorrow to visit relatives. I'm excited and apprehensive, in equal measure. Wish me luck, because ultimately that's all I've got.