Monthly Archives: September 2010

On Living Without a Diagnosis

“A diagnosis is just a tool to get you what you need,” said a good friend of mine, by way of his therapist. His statement particularly resonated for me because for a long time I’ve been a woman without a diagnosis.  This article is about why I am finally OK with that.

First of all, it’s not entirely true that I don’t have a diagnosis: I’ve been given many different diagnoses by many different doctors.  Some of these labels are simply descriptions: atypical facial pain, idiopathic neuropathy.  Some of the labels don’t really fit me or have that lovely word “Syndrome” at the end of them, and I’ve become so aware of that word I eventually started telling people, jokingly, that I simply have Syndrome.  Some of the labels given to me were taken away later, misdiagnosis: “you don’t actually have asthma, you have paradoxical vocal fold movement!” (a voice disorder that mimics asthma).

I have learned some huge lessons from all my time spent in the medical-industrial complex: doctors don’t have all the answers, and that a good doctor is one who says, “I don’t know.”  Also, chasing after a diagnosis, endlessly, is a game with steeply diminishing returns.  You might get a diagnosis that is wrong.  You might never get one at all that gets you what you need, especially if what you need is outside the medical system entirely.  I spent hours and hours with doctors and nurses, trying out dozens of medications, and in the end I accomplished very little. Meanwhile I invested all kinds of desperate hope that the next specialist might be able to help me.  I am not advocating giving up hope: I am advocating having realistic expectations about the medical system.  Investing all my hope, time, and energy in finding a diagnosis and/or treatment for my ailments was not effective nor enjoyable.  Years later, I am basically in the same state of health that I was when I first got sick.

I have reached a place where I am quite comfortable not having a diagnosis.  I’m sure the medical system does not agree with nor support this stance.  Everyone must have a label, otherwise how will they know what box to put us in, which specialist to send us to?

I say about myself that I have chronic pain and illness.  I have a disability.  If people want to know more than that, I will tell them about my experiences, my feelings, my activities as a disability activist, the way I live my life.  Many people seem to want a label, and for a long time I did too: something to say to the pharmacist, the people at work, my extended family; something simple, something people could understand.  People understand things like migraines, like diabetes or anemia.

There are certainly concrete benefits to having a diagnosis: If I had a diagnosis I could use Google to learn more about my illness.  I could perhaps find support groups populated by people with my same illness.  I could perhaps get government disability benefits.  These things are not impossible to get without a diagnosis, but they are harder to find.  There are, for example, support groups and counselors for people with chronic pain, which my medical system eventually referred me to.

But what I really needed to find was the social justice community. What I needed, and eventually found, was disability identity.  Right here are the tools I need to help me live a life with pain and illness.  Here is a supportive community, coping techniques, theory, friends.  A person doesn’t necessarily need a diagnosis to live here.     ?

Signal Boost: Assistance Dog Blog Carnival — Your Input Requested

Gentle Readers!

Sharon and Barnum over at After Gadget have it in mind to begin an Assistance Dog Blog Carnival. The majority of the information can be found at their blog:

I love blog carnival and blogswarms. I try to participate in them as much as I’m able (which is a lot less often than I’d like). Lately, it’s been occurring to me, with the blossoming of so many new, thoughtful, lush, sassy assistance-dog blogs that it might be time to start an AD carnival or to do a blogswarm.

However, this would require many interested participants:

– Sites to host the carnivals (if we went the carnival route);

– Bloggers to submit their posts;

– Readers to read the blogs!

Sharon is asking that anyone interested, or with feedback, answers to the questions posed at After Gadget, please leave them in the comments section there. I hope that you can show some support for this, and if you know anyone who might be interested, please feel free to pass this information along!

Autism & Internet Usage Survey

ETA: Several people have brought up concerns with this survey in the comments, including the AQ test that is at the end. You may want to check the concerns in the comments before deciding if you want to take the survey.

I am an active autistic self-advocate and autism researcher (PhD student, educational psychology). I was wondering if you could take or pass on an autism spectrum-related online research survey I helped to develop?

It received full ethical approval from the review board and contains
consents within it. I think it is sensitively written and it is open to feedback.

The survey is examining the relationship between the autism spectrum and Internet use, identity, and visual perception. Please note that scores are completely anonymous and it’s for any adult or child of at least 7 years in age.

We especially need people who are diagnosed on and/or self-identify as on the autism spectrum. Participants can get help in completing it if needed.

Here’s the link: Survey Monkey Website

It might take about 15 minutes.

Recommended Reading for 30 September 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Can you believe it already the end of September?

The Vibrating Square: Respect (Sent in by The Untoward Lady)

But it’s not about intent. It’s not even about the very real impact that such language has on people like me. It’s not even about the fact that what you said is hurtful.

Brilliant Mind Broken Body: After the Separation (Glad you are well again and home, Kali)

But I went through 2 1/2 days of my service dog not wanting to have anything to do with me, and that was their fault for separating us.  I went through more pain at the hospital, I was alone, and I had to deal with days of my service dog ignoring me.  If it weren’t for them, all I would have had to deal with last week was a nasty stomach virus.

The Consumerist: Continental Sorta-Apologizes For Not Allowing Service Dog On Flight

Jessica says Continental offered her a couple of coupons to make good — one for 10 percent off of a flight and another for a free drink. She says she’ll need to give them to a friend because she’s given up on flying for the time being.

Disability Rights California: The California Memorial Project

The perfect last day of a California summer drew a collection of advocates, supporters and community representatives to the Stockton Rural Cemetery. The gathering honored hundreds of people who had died anonymously while residing in the Stockton State Hospital, established in 1851 as the state’s first “asylum” and closed in 1996.

Disability Books: Stevie Wonder Calls for International Action to Enhance Accessibility for Visually Impaired Persons

World-famous singer-songwriter and UN Messenger for Peace Stevie Wonder called on the international community to take action to enhance accessibility for all those with physical disabilities. Speaking at the opening of the annual meetings of World Intellectual Property Organization (WIPO) Assemblies on September 20, 2010, he challenged delegates to conclude an agreement on improved accessibility to copyright protected works by visually impaired persons (VIPs) within a year.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Guest Post from Lisa: Invisible Ableism

Lisa Harney is a single lesbian with ADHD, three cats, and a penchant for writing about social justice and transphobia. She blogs regularly at Questioning Transphobia.

So one of the most frustrating experiences of coming to terms with my disability is realizing just how much ableism has impacted my life without my realization. I mean, I knew that this stuff was not really fair or reasonable, but I didn’t really know why.

When I was in the first grade, my teacher told my mother she thought I had a learning disability. My mother’s goal was to prove that I had no disabilities at all, so she had my intelligence tested and I was categorized as “gifted.” It was also determined that I was nearsighted, which required me to wear glasses. Somehow, unfortunately, neither of these solutions actually helped with my problems: I had trouble retaining what the teacher said to me, and I had trouble doing all of my schoolwork.

In retrospect, being marked as gifted was mostly negative. It meant I had more pressure to perform well, that I should be a straight A student, but I never managed this. My report cards are littered with “doesn’t pay attention” and “doesn’t apply herself” and other negative assessments that read to my parents as “Lisa doesn’t fulfill her true potential.” Now, of course I wanted to, but to me grades felt almost like an arbitrary lottery. I never got grades commensurate with the effort I put into class, and no matter how much effort I did put in, I’d get in trouble when my report card had too many Cs and Ds. There was a reason I could make it to the spelling bee state finals and do calculations in my head, and yet still couldn’t maintain any kind of consistent quality of work.

This had repercussions at home. I learned from my father that I was stupid, lazy, inconsiderate, and selfish. I learned these lessons really well. I internalized them. Somehow I was convinced that I was really sabotaging my own school work. His conviction in my potential wrongdoing was such that he would grill me about what I did at school every day once I got home, and the right answer was always “I didn’t do my schoolwork.” If I said I did, I’d be punished for lying. So I learned to lie to him because the lie was the only acceptable answer. And he convinced me I was an inveterate liar, so it was interesting to realize once I got out on my own that I was total rubbish at it.

So yes, from most of my teachers as well as my father, I learned that I was pretty worthless; that I was stupid and lazy. That my problem was that I refused to apply myself and spent too much time daydreaming, or reading novels, or playing games (role playing games, mostly). That everything I enjoyed was a personal flaw, and that everything I failed at defined me. And this has stuck with me for a long time.

This carried through into my first long-term relationship – which was also abusive. But my partner liked to especially pick on my inattention, my tendency to zone out in the middle of a conversation, my forgetfulness, and insisted on treating me as if I was a child to be controlled instead of her girlfriend. She went beyond this, but this itself is apparently a common pattern in relationships with ADHDers – that a parent-child dynamic develops. This is often framed in articles and literature and by non-ADHD spouses and partners as something the ADHDer is totally responsible for, and relationship problems are often blamed entirely on ADHD, but the non-ADHD partner’s ableism is practically never discussed. And being treated like a child, having every mistake scrutinized and berated and everything you do ignored and forgotten takes a huge toll on you. It’s abusive. My partner was abusive in many ways beyond this, so I don’t want to make it sound like her ableism fueled all of the strife, but it definitely had an impact.

Every attempt I made to enter college hit a wall. I would do really well (and learned I was not in fact lazy or stupid) until I couldn’t anymore. I don’t really know how to describe it. I wanted to get my degree, but once I hit that point, college went from doable to extremely difficult. It may have been changes in routine, greater difficulty in classes, overall stress from spending that much energy to excel constantly without a break. I don’t really know. I just know that I would hit a point beyond which it was very difficult for me to continue. And that I didn’t even know how to find support or assistance, that I don’t feel resources for this were really clearly explained to me if they existed at all. And besides, maybe I was lazy and stupid, right?

Most of my jobs went the same way – I’d do a job well until I couldn’t keep it up any longer, and I’d often have to quit because simply going in was difficult. Again, this is hard to describe, how this works. It is not that I wanted to lose my jobs or that I did not enjoy them, but that I’d end up being unable to continue, or that I’d find it difficult to meet basic requirements like punctuality. And I’d be left wondering how I could have sabotaged this amazing job, and how lazy and stupid I must be and how much I must hate myself to make these choices.

And this really was a spiral of self-hatred and recrimination that continued until the past few months. That I was holding myself to standards I had no idea I couldn’t attain without help, medication, accommodations. That my knowledge of ADHD, the background cultural knowledge was so lacking in information that I really had no idea how to start looking into this, or even that there was anything to look into. I spent more time wishing I had done everything better, that I hadn’t made so many mistakes, that I hadn’t lost two promising careers, that I hadn’t apparently done everything in my power to block my own success. That I had no idea I was not only limited because of my neuroatypicality, but because there simply wasn’t any easily accessible information that would have helped me realize what was happening to my life. Even when I saw doctors about my GAD and panic disorder in 2003, the possibility of ADHD never came up.

Since I wrote my two posts about ADHD on Questioning Transphobia, I’ve had several people tell me in comments, e-mails, or chat that they related strongly to the symptoms I described, that by making my experiences with ADHD accessible, people who have been undiagnosed so far – who might themselves have ADHD – know about the possibility and can respond to that information. According to at least one researcher – Dr. Russell Barkley – it is possible that only 10% of ADHDers who have gone undiagnosed into adulthood are diagnosed as adults.

I am not saying that experiencing ableism without even realizing you have a disability – let alone what ableism is – is worse than experiencing ableism when your disability is known. Just that it was a dark moment for me to realize how much of my life has been defined by ableism, and how much I had no defense mechanisms at all to cope with that and how much I had to realign my own understanding of decades of my own life. The end result is good, in that I was able to resolve a lot of my own self-hatred, but the realization itself was a bit shocking.

Interested in submitting a guest post to FWD? Read our call for guest posts here for more information!

Dear Imprudence: Yeah Hi I’m Actually Right Here

Back in July, the following letter/response ran in Dear Abby:

Dear Abby: I am the parent of a child with special needs. To an outsider he looks different; adults and children stare at him when we’re out. My son is not aware of their impolite behavior, but I am — and it really irks me. What should I say to these insensitive people? — Boiling Mad in New Jersey

Dear Boiling Mad: I don’t think you should say anything. It is not unusual for individuals of every age to do a double take when they see someone — or something — that is “different.” Of course staring is impolite, but unless someone makes a remark or asks a question about your son, you should ignore the person.

Abby got some reader mail in response, so she decided to run a column featuring some of the letters she received. As FWD readers know, I am not a fan of the euphemism ‘special‘ and I dislike labeling basic needs as such. However, it’s very common, so I pretty much expected a thicket of ‘special’ this and ‘special’ that in Abby’s column. But I also expected at least one letter from a person with a disability, because Abby has run letters from us in the past on topics relating to disability issues.

Were my expectations met? No, they were not. The title of the column is ‘Special-needs kids build bridges of understanding.’ Three of the five letters were from mothers of children with disabilities and they all pretty much said that we have a responsibility to educate people staring at us:

…I now regard it as an opportunity to educate them about autism. I hand them a card explaining it that contains a link to the Autism Society of America.

This tactic, rather than ignoring people, is the way to go. If more people educated others, the stares and rude comments would become smiles and support.

One letter, well, here, I’ll give you the first paragraph:

I worked with special-needs children for a number of years. I actually believe that it is good when people stare. It gives us a chance to help the child learn social skills.

And finally…

I’m one of those folks who “stare” at others. By no means is there ever a bad intent. I’m a people-watcher. I love watching people communicate in different ways, like signing. Whether someone is in a wheelchair or has a visible disability, I value each and every person.

Maybe “Boiling Mad” doesn’t understand that many of us are willing to reach out, lend a hand or just be friendly. I wish to embrace, not ignore, and I hope my behavior isn’t perceived to be offensive.

So, we heard from parents. We heard from people who are a fan, evidently, of the ‘tough love’ school of thought; staring makes you stronger! And we heard from someone who likes to stare at people.

We did not hear from anyone who gets stared at. Ouyang Dan, writing about a different advice column involving the nondisabled gaze and what to do about it, pointed out:

I get extremely uncomfortable and irritated with people who can’t manage to be polite and respect the privacy of other people. “Othering” is a concept that riles me pretty good, and othering people based on circumstances beyond their control is right up there on my list of things that will get you “unfriended” or “unfollowed” in a keystroke. Beneath that is treating people with disabilities as if they do not have a right to privacy when they are in public with you. As if their existing in a manner that you find abnormal is somehow negating their right to eat lunch without you staring at them.

Abby’s decision not to represent any people with disabilities in her column is noted. I’m willing to bet that some people with disabilities wrote in about how much they do  not like being stared at, to point out that when everyone is staring at you, it is most definitely perceived as offensive. It’s not ’embracing’ at all to feel like you can’t go to the grocery store, ride a horse, sit in the library, or do any number of other things without people gawking at you. Being stared at is not fun.

It is also not an opportunity for a teachable moment. People going about their daily business are not diversity educators. They are human beings, doing human things, and just wanting to get those things done. Having to question whether or not you want to go out on any given day because you don’t feel up to dealing with stares is not enjoyable.

I don’t know how to deal with staring. I get stared at a lot and it upsets me. Ignoring people doesn’t quite seem to work. Staring back sometimes shames them into looking away, by reflecting their gaze back on them and forcing them to consider how it feels to be stared at, but I really have a hard time with eye contact and often staring back at people forces me to meet their eyes. Sometimes I say something like ‘pardon me, is there something on my…’ and then they mumble and look away. But I definitely do not feel like it’s my responsibility to educate people when I’m going to the post office or having dinner with friends. They can go educate themselves. Or they can pay to take a workshop where I would be more than happy to educate them in a structured classroom environment.

Recommended Reading for Wednesday, September 29

Insomnia Anna says: “Yawn”

Raising My Boychick: On The Ubiquitous Use of “Crazy”

Now you’re just being melodramatic. Don’t you have bigger things to worry about?

Sure. I have mental health disparity because of racism and other bigotries, and exorbitant prices of prescription drugs, and insurance that won’t cover the medicines that work for me, and mental health wards closing, and overcrowding and dehumanizing protocols in the ones still open, and cops shooting people they know are unwell, and mental health used as an excuse to take away our kids, and a lack of effective treatments, and a terrifying mortality rate that people treat as a dishonoring failure in morality. I got lots of bigger stuff to worry about.

Where’s the Benefit: No Wonder People Think We’re All Scroungers

The coalition government’s attack on disabled people isn’t limited to reassessing benefits or encouraging members of the public to shop “scroungers”. Something rather more terrifying is going on: the government and associated entities are repeatedly, and persistently, describing Disability Living Allowance as an out-of-work benefit – which helps convince the general public that it’s a waste of “their” hard-earned tax.

As I wrote in this piece for Guardian Comment is Free, the government’s State of the Nation report offers a woefully misleading representation of the nature and purpose of DLA. “There is a high degree of persistence among claimants of many low-income and out-of-work benefits”, it says. “For example … around 2.2 million people, including 1.1 million people of working age, have been claiming disability living allowance for over five years”.

New Muslim Comic Book Superhero on the Way [Comments are horrible]

The new superhero is the brainchild of a group of disabled young Americans and Syrians who were brought together last month in Damascus by the Open Hands Intiative, a non-profit organization founded by U.S. philanthropist and businessman Jay T. Snyder.
The superhero’s appearance hasn’t been finalized, but an early sketch shows a Muslim boy who lost his legs in a landmine accident and later becomes the Silver Scorpion after discovering he has the power to control metal with his mind.

Astrid’s Journal: Autism, Intellectual Disability, and the concept of Primary Disability

The other point I have huge disagreements with, is the excusing of the lack of attention for intellectually disabled autistics from autistic advocacy groups. This excusing comes from the reasoning that these groups are concerned with autism, not intellectual disability, but you cannot specialize multiple disabilities away. In my opinion, autistic advocacy groups should be concerned with all autistics, including those with multiple or severe disabilities.

Disability Now interview with Dan Daw of Restless Dance Company in Australia: Dancing Dan: The Wizard from Oz

What’s the best thing about being disabled?
Watching people’s faces as the cogs turn when I use the words “dance” and “disability” in the same sentence – priceless!

What funny things get said about your impairment?
My favourite is at airports when the metal detectors beep and they presumptively say, “Oh, you’ve got a metal hip”. “No”, I reply, “I’m wearing a belt”.

Marissa at This is Hysteria: Go Where? Gender, Ability, Intersectionality and Constructivism Please note this is an image-heavy post, and the disability-specific stuff starts about halfway down.

This flawed way of understanding identity – each deviation from the default seen as a discrete layer – is reflected in the washroom signs indicating wheelchair access. Often, there is a male figure, a female figure, and a third non-gendered figure in a wheelchair. Disability is depicted as a discrete aspect of identity, to be layered on top of gender.

Simon Darcy at Accessible Tourism Research: Inherent Complexity: Accessible Accommodation Room Components

Most research had identified the generalities of accessible accommodation requirements without having any specific empirical approach to understanding the needs from a mobility, vision, hearing and cognitive perspective. Each individual has their own access discourse where they value the relative importance of certain room components based on their individual access needs (e.g. many wheelchair users require a roll in shower & hand held shower hose Photo 1). While the overall building codes and access standards identify a myriad of components, the individual only understands at least complex technical documents from what they require in an accessible room (Australian Building Codes Board, 1990; Standards Australia, 1992, 2001, 2002). On the other hand, the accommodation manager manly as a understanding that their establishment has a “disabled room” that people with disability should be other stay in. Hence, once an individual hears that establishment has an accessible room they believe that it will meet their needs (Darcy, 2010).

In The News:

Canada: Dead Veteran’s Last Battle Was for Disability Cheque. “On Feb. 27, he died at the age of 93 in Barrie, Ont. Three weeks later, the $55,000 disability cheque he had been expecting arrived, becoming part of the assets in his small estate. That is, until officials with Veterans Affairs Canada ordered the money seized. Quick may have qualified for a disability but now that he was dead the government wanted its money back.”

UK: MSP Drops disabled clause from assisted suicide bill “Bill Scott, Policy Officer at the campaign group Inclusion Scotland, welcomed the decision, saying: ‘That clause was dangerous, particularly at a time of cutbacks, to say to people you can’t live independently but you can apply for state-assisted suicide as if it’s a way out.'”

Australia: Disabilities ‘forgotten’: opposition “Senator Fifield said more needed to be done to help people with disabilities because neither Labor nor the coalition had “covered themselves in glory” on the issue.”

(Semi-)Weekly Job Round-up

As always, these are jobs that I come across in my web-readings, they are not endorsed by anyone here in any way, and I cannot answer any questions about them. I only have two today: The first is in the UK, the second in Canada:

Company Seeks Amputee Actors [UK]

Trauma FX Ltd employs amputee actors – male and female, aged at least 18 years old – and special effects make-up artists who are contacted to work throughout the UK providing Casualty Simulation (CASSIM). Further details at the website linked above

Volunteer Ottawa
Program Coordinator, Volunteers with Disabilities
Application Deadline: February 2, 2010
Volunteer Ottawa is a direct support organization for more than 300 not-for-profit and voluntary organizations in the community and is a critical link between volunteer energy and community need through its promotion of volunteerism to individuals, groups, workplaces and schools. Volunteer Ottawa is a resource for training, consultation and materials for all not-for-profit organizations and public institutions in the Ottawa region, and helps them build their capacity to engage volunteers successfully. Volunteer Ottawa is a leader, partner and educator on issues that impact on the voluntary sector.

Summary
Reporting to the Manager of Programs, the Volunteers with Disabilities Program Coordinator is responsible for the development, implementation, coordination and evaluation of the Centre’s Volunteers with Disabilities (VwD) Program. The VwD Program Coordinator may also be required to take on other responsibilities relating to the overall functioning of Volunteer Ottawa.

Responsibilities
• Ensures that all contacts made by potential program partners, current program partners, persons with disabilities and other interested parties are responded to effectively and efficiently
• Coordinates the Volunteers with Disabilities Program outreach activities (Fairs, marketplaces and speaking engagements)
• Is responsible for the delivery of workshops and presentations
• Coordinates one on one guidance sessions
• Provides leadership, consultation, advice and guidance on all aspects
of accessible volunteer services management to nonprofit organizations
• Completes member agency site visits to evaluate, assess and make recommendations to increase program accessibility
• Manages volunteer resources, including recruitment, placement, training, supervision and evaluation of program volunteers/students
• Prepares reports and evaluations

Qualifications
• Community college diploma in social services, relevant field or
equivalent experience;
• 1–3 years relevant experience working with persons with disabilities,
such as providing community-based services including outreach, education, and community development, personal experience beneficial;
• Knowledge of the voluntary sector and understanding of the volunteer
management cycle;
• Experience in reporting project deliverables;
• Excellent communication and interpersonal skills;
• Oral fluency, reading and writing ability in English, French an asset;
• Ability to work flexible hours
• Strong computer skills essential
• Ability to multitask and meet timelines
• Able to work independently and as part of a team

Volunteer Ottawa thanks all applicants for their interest. Only those selected for an interview will be contacted. Volunteer Ottawa is committed to hiring a workforce inclusive of the diverse population it serves. This is a 19 hours per week, 12 month contract (possibility of extension) @ $18/hour.
Please mail or e-mail a resume and cover letter to:
Joan Anderson
Volunteer Ottawa
Administrative Assistant
402 – 2197 Riverside Drive
Ottawa ON K1H 7X3
Email: joan@volunteerottawa.ca
For more information visit: www.volunteerottawa.ca

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.

Self-Portraits With Disability: Josephine King

Joesphine King is an artist with bipolar disorder who produces startling and evocative self portraits.

Josephine King remembers her first self-portrait and how it showed up out of nowhere. She was “really ill” with bipolar disorder, living alone in a flat in Amsterdam. “I was in psychosis. I was desperate, not at all well in my head. I thought, the only thing to do is a painting.” She worked until a woman emerged against a brilliant pink background. This was the painting that launched five years of obsessive self-portraiture, framed with texts spelling out what it is to be manic depressive. (source)

Originally establishing herself as an artist in ceramics, she turned to portraiture after her diagnosis in 1999.

A painting in several scenes. Across the top, representations of childhood: The artist sleeping in bed; a cozy house; the artist standing as a young child; a lighthouse. Two smaller scenes below, one of the artist sitting in a kitchen with a defeated expression, another of a cheery stove with a quilt behind it, a dog curled up on the hearth. Below, a larger image of the artist turning away from a canvas and being slapped by her brother. Around the frame, the text: 'My brother hit me in the atelier. Childhood fear + pain made me do it. Unbreakable bond.'

‘Unbreakable Bond’

The artist in a bold red skirt and grey striped top, holding a tiger with legs outstretched. Around the frame, the words: 'After the clinic, I went to India to look for tigers: I found none, just paper tigers.'

‘Paper Tigers’

The artist in a brown patterned dress with an apron, a small white and brown dog curled up next to her. Around the frame, the words: 'My beloved dog Primo decided to close his eyes forever. Grief released depression.'

‘Grief’

The artist in a blue shirt and skirt, standing stiffly with her arms by her side. A cigarette dangles from one arm. Around the frame, the words: 'My psychiatrist was a chain smoker. I didn't get a cure, but I took up smoking.'

‘Chain Smoker’

Each portrait tells a little piece of her story. I really love her use of colour, textures, and shapes and I like that while each picture stands on its own really well, they can also be viewed together as part of a larger narrative about her life and her disability.

More pictures of her work can be seen at The Independent and FWD readers in and around London can see her work on display at the Riflemaker gallery.