Tag Archives: othering

Traveling While Disabled: One Size Fits All?

When it comes accessibility, where it exists, it seems that it often begins and ends with some accommodation for wheelchair users. And it seems, at least in my experience, that this is especially so in the case of the travel industry.

Several weeks ago, my air conditioning at home died and my house was hovering at a near constant 90°F and I just couldn’t take it any more, so I headed off to a hotel room for a weekend. While I was at the hotel, the fire alarm went off. (Actually, it went off five times, but that’s a story for another time.) As I opened the door of my room to evacuate, I was shocked by a bright flash of light coming out of the room across the hall. In my rush to get out of the building (which wasn’t on fire or anything like it) I didn’t think about the flash. It wasn’t until I returned that I realized what I’d seen.

My room was across the hall from the two wheelchair accessible rooms in this hotel, and that bright strobing light was the fire alert for the hearing impaired.

In a wheelchair accessible room.

I’m not sure if this particular hotel figures that wheelchair users are more likely to be deaf, or that deaf people are more likely to use wheelchairs.

It seems more likely that the choice was made based on the common misconception that “wheelchair users must have wheelchair accessible rooms, but anyone can use one” thus it’s no big deal for a non-wheelchair using deaf person to have to stay in that space. This is, of course, not true. The lack of tub, higher profile toilet and lower sink and bed each have implications for people for a variety of physical reasons.

And clearly they either haven’t realized or simply don’t care that if a deaf guest has to be in one of the two wheelchair accessible rooms in order to be safe in a fire, that means a wheelchair user can’t be accommodated at that hotel at all.

And so it goes. There was no signage for blind guests, except at and in the hotel’s elevator. There was no way for a blind guest to use the navigation signs to get to the elevator, nor to figure out which direction their room might be in once they were off of the elevator.

And what of guests who have mobility limitations but don’t use wheelchairs? This is my area of attention, because that’s me. In particular, I have arthritis and precarious balance, and the place where this becomes an issue most frequently the shower. Far too often, there is nothing to hold onto to climb in and out of the shower (which is odd considering that bathroom falls are so common and so dangerous) and inside the shower, there are slippery floors, sloped toward the drain. Showering in a hotel for me is often an exercise in holding onto the shower curtain rod and barely moving for fear of falling.

A walk-in shower without a tub would be ideal for me, but the tourist or business class of hotel where I tend to stay (not being made of cash) doesn’t seem to think that such a thing is needed. (Oddly, large walk-in showers are present often on concierge floors or in higher end hotels as a luxury item.) But at the same time, the other modifications which are made in bathrooms in wheelchair accessible rooms are a burden to me. I’m left with the choice: do I fight with the shower or with the toilet? How does a person decide that?

The travel website Expedia allows users to search for hotels which have certain “Accessibility Options” like roll-in showers (not “walk-in” which points toward a fully wheelchair accessible room), equipment for the deaf, braille signage or accessible bathrooms (which may or may not have roll in showers, I have no idea why they’re listed separately) though it only seems to provide hotels which have such things. There is no guarantee that the room that a person books will have the accessibility feature that they need. And far too often, I’ve found that hotels aren’t even able to be sure that they’re giving a guest a room with the number of beds that were requested, or a non-smoking room according to the reservation. I have a hard time trusting that making a reservation for a room with a visual fire alarm will always result in getting one at check-in.

The answer is always “call the hotel directly.” Which is great, if the traveler is able to use a phone.

I am just cynical enough to believe that for planners, architects and managers in the travel world, accessibility is an afterthought, and the bare minimum which meets legal requirements is all that is done. We as PWDs should be glad that there are wheelchair accessible rooms, and if they don’t fit our needs, we just have to make do. They’re ADA compliant, after all.

I’m entirely sure that they could do better. What I’m unsure of is how to make that happen. This seems like an area where the usual catch-22 applies: they don’t have enough PWD as guests for a broader range of accommodations to seem necessary, but they don’t have PWD as guests because there aren’t sufficient accommodations. And as usual, we’re the ones who pay.

Things That Make My Life Easier, A Reintroduction (Part 1 of 3)

A long time ago, I decided to start up a series. I lacked a catchy title, so I went with the mere truth: Things That Make My Life Easier.

What I meant by that is, of course, things that make my life with a disability easier.

Disability can introduce certain complications to a life — meaning that in reaching the same destination, a disabled person may have a bumpier, windier, more obstructed path than a nondisabled person. A disabled person may simply have more to deal with than hir nondisabled counterpart. And this is not inherent to hir condition: much of that difficulty, that obstruction, is constructed by a society that is built to suit a nondisabled person’s needs, concerns, and preferences. Some of it, to be sure, is difficulty that will never be eliminated, no matter the social context.

This means two things, things that are not at all contradictory but, in fact, must both be recognized for us to make any progress:

One, that disabled people face a great deal of difficulty that is ultimately the result of a society that cares more about the convenience of the comfortable than the comfort of the inconvenient;

And two, that disabled people may always face some amount more difficulty than their nondisabled peers due to the intrinsic nature of neurological and physiological variation.

Disability is an experience all its own. But at the same time, disability is not particularly [anything]. Disabled people are experiencing the same thing nondisabled people are, by the by: they are experiencing pleasure and experiencing pain; they are experiencing acceptance and experiencing rejection; they are experiencing stability and experiencing change. They are learning and expanding; they are teaching and demonstrating. They need food and drink, and the opportunity to get rid of bodily waste. They need shelter from the elements, a comfortable place to sit or lie. They need transport if they are mobile; they need a way to enter buildings; they need an effective method of communication with other people. They need social interaction; they need solitary time. They need intellectual stimulation; they need leisure and entertainment.

These are all things that nondisabled people need, too. They are not “special” needs. They are human needs. A core set of needs that we all share.

But these needs are not all met in the same ways.

This is the beauty of humanity, really: presented with a particular need, a set of people will take all manner of approaches, using all sorts of different resources available, finding all kinds of different ways to use them — different paths to the same end point. All paths take a toll on their travelers, while offering to those travelers certain advantages. It is up to the individual to weigh the costs and benefits of any specific way sie might take.

There is no moral weight to one path over another. That it harm none, do what you will. Whatever you are doing, so long as you harm no one else, it is good. Or, put another way: Whatever you are doing, however you are doing it, if it gets done, who the hell cares beyond that?

Next: A Reintroduction (Part 2 of 3)

Cross-posted: three rivers fog, FWD/Forward, Feministe.

Recommended Reading for June 15, 2010

dhobikikutti (DW): This is also needed: A Space In Which To Be Angry

And what I have realised is that there is a sixth component to [personal profile] zvi‘s rules, and that is that complaining about and calling out what you do not like does help, slowly, painfully, get rid of it.

Every time I see friends who make locked posts about fic that Others them, that writes appropriatively and ignorantly and dismissively and condescendingly and fetishistically about their identities, I think — there needs to be a space where this can be said.

damned_colonial (DW): Hurt/comfort and the real world [warning: derailing in comments]

Writing a short ficlet in which someone who has been abused/injured/disabled/etc is “comforted” and feels better seldom bears much relation to the reality of abuse/injury/disability/etc. Which, OK, we write a lot of unrealistic things. The problem with this one is that the idea of hurts being easily cured/comforted is one that also exists in the real world and harms real people. Almost anyone with a real-world, serious “hurt” has had people dismiss and belittle their experience on the assumption that they “should be over it by now” or that “if you just did X” the problem would go away. People are often treated badly or denied care on these grounds.

Pauline W. Chen, M.D. (New York Times): Why Patients Aren’t Getting the Shingles Vaccine

“Shingles vaccination has become a disparity issue,” Dr. Hurley added. “It’s great that this vaccine was developed and could potentially prevent a very severe disease. But we have to have a reimbursement process that coincides with these interventions. Just making these vaccines doesn’t mean that they will have a public health impact.”

Trine Tsouderos (Chicago Tribune/L.A. Times): The push and pull over a chronic fatigue syndrome study

Nine months later, the joyous mood has soured. Five research teams trying to confirm the finding have reported in journals or at conferences that they could not find the retrovirus, known as XMRV, in patients diagnosed with chronic fatigue syndrome, casting grave doubts on the connection.

Kjerstin Johnson at Bitch Magazine’s Sm{art} blog: Riva Lehrer’s body of art

To Lehrer, who has spina bifida, “Disability and art are natural partners. In order to have a good life with a disability, you have to learn to re-invent your world almost hour by hour. You discover ways to re-imagine everything, and how not to take the average answers to everyday questions…”

“Saying conjoined twins are disabled is insulting!”: Evelyn Evelyn, redux

[Cross-posted to Hoyden About Town]

Something that has really struck me about the conversations around Evelyn Evelyn is the reaction that “Conjoined twins don’t have a disability! To say they do is insulting!”

Not all commenters make the link between the two statements – some stop at the first – so I’ll take these two separately.

A little background: Evelyn Evelyn is Amanda Palmer and Jason Webley’s new ‘art project’, presented as fact but understood as fiction, in which they “discover” poor struggling musically-gifted conjoined twin orphan women, save them from their child porn and circus-exploitation past, and help them – in a long drawn-out process, due to the women’s traumatic fallout and difficulty relating – produce their first record. Palmer and Webley dress up as the twins to perform on stage, co-operating to play accordion, ukelele, and sing. They can barely restrain their sniggers while they interview about this oh-so-hilarious and edgy topic. More in the Further Reading.

“Conjoined twins don’t have a disability!”

So, a note on normalcy. The idea that some people would shout in defence “But conjoined twins don’t have a disability!” took me by surprise. I wonder how these people are defining “disability” in their heads, if they’ve ever thought about the subject – do they picture a hunched figure, withdrawn, unable to work, self-care or socialise? Do they picture someone undergoing huge medical procedures, someone with prostheses or other visible aids? What is the image in their heads?

Because disability can be all of these things, and none of these things. Disability isn’t a checklist, or a fixed point. Disability – and normalcy – are socially constructed. Disability is the interaction between a characteristic or a group of characteristics often called “impairments”, and a world that recognises people with these characteristics as abnormal.

Disability is considered a tragedy, a fate to be avoided at all costs. Disabled people are those that society defines as “abnormal”. Disabled bodies are the ones that don’t fit in typical boxes. Disabled people are people that the physical and social environment doesn’t accommodate. Disabled people are considered defective, deformed, faulty, frightening, feeble, freakish, dangerous, fascinating. Disabled people are stigmatised, laughed at, looked down upon, marginalised, Othered. Disabled people are medicalised. Disabled people are defined in terms of how currently-nondisabled people view them.

Disabled bodies are those that are subject to the able-bodied stare.

It is obvious with the most cursory of glances that in our society, conjoined twins are disabled. Society does not accommodate them. They are medicalised from fetushood. They are spectacle. Their operations are videoed and broadcast across the world. They are displayed, tested, stared at, discussed, and mocked, purely because of the shape and layout of their bodies. They are the subject of comedy fiction and “inspiring” tragedy nonfiction.

How can people simultaneously look at this project as funny and edgy and worth paying money to stare at, while considering conjoined twins to be “not disabled”? Why are their bodies so hilarious, then? Why is it so funny when Palmer and Webley cripdrag-up in that modified dress? Why do they snigger and smirk as they talk about “the twins” and their tragic tale? They do this – you do this – because you do see these bodies as Other. Fascinating, bizarre, freakish. Fodder.

People with disabilities resist these definitions, resist being marginalised, Othered, stared at, compulsorily medicalised. (Just as we try to resist, where possible, being beaten, abused, raped, exploited, exhibited, forcibly sterilised.) We laugh at ourselves plenty. We reclaim terms like “crip” and “gimp” and “crazy”. This does not grant able-bodied people free rein to mock us, to play schoolyard imitative games, to use child porn survivors as a little bit of “colour” for their projects.

There is a lot more to be said on the social construction of normalcy. I strongly recommend Lennard Davis’ Enforcing Normalcy . For more reading, check out this booklist at Hoyden About Town, our booklist here at Disabled Feminists, and our blogroll.

“To say that conjoined twins have a disability is insulting!”

This one’s quicker and easier to debunk. No, it’s not insulting. It’s as simple as that. It’s not an insult because being disabled is not an inferior state. Saying that someone is disabled is no more insulting than saying “Lauredhel’s a woman” or “Barack Obama is black”.

Being disabled just is.

~~~

Further reading on the Evelyn Evelyn conversation:

Annaham’s post here at FWD, Evelyn Evelyn: Ableism Ableism?

Amanda Palmer’s blog: The Whole Story Behind “Evelyn Evelyn” [WARNING: invented story about child sexual abuse and exploitation; the other links discuss this also]

Amanda Palmer’s blog: Evelyn Evelyn Drama Drama

Jason Webley: Blog #1 – Evelyn

Amanda Palmer’s twitter, in which she remarks “setting aside 846 emails and removing the disabled feminists from her mental periphery, @amandapalmer sat down to plan her next record.”, and follows up “pain is inevitable. suffering is optional.”

SPIN magazine: Meet Amanda Palmer Proteges Evelyn Evelyn

Sady at Tiger Beatdown: AMANDA PALMER WANTS TO SHOCK YOU. Just Don’t Get Upset About It, ‘Kay?

TVTropes: Rape Is The New Dead Parents

The linkspam roundups: First, Second, Third (and possibly more as time goes on)