QuickPress: Disability Blog Carnival 71 is up!

As it is late and dinner is calling, I’m going to cheat and just C&P what Penny says over at Disability Studies. Penny: For All Your Disability Blog Carnival (And Disability History) Needs!

The November edition is up at Modus Dopens, and it’s a good solid collection of links, around the theme of intersections. Go, fix yourself a drink (suggests the host!), and have a read.

The December edition is due to post at Rolling Around in My Head, where Dave H has invited posts around the theme “long nights and what we need to get through them,” appropriate for the month with the literal longest nights (in the Northern Hemisphere), and a month with holidays that can feel like very long nights for many. Submissions are invited by December 15th for inclusion in the carnival.

Penny is also looking for hosts for the new year, so please do check her out.

I’ve only had a bit of an opportunity to look over the links, and again, this Disability Blog Carnival looks outstanding. I can’t tell readers enough: There is a rich and vibrant disability blogosphere, and I love it.

For Granted

It’s odd how we sometimes take the habits of our children for granted.

I have a particularly chatty child. I can’t imagine where she gets her penchant for being a non-concise story-teller. Really. I can’t.

But when it is early in the morning and I haven’t had a chance to heave my second cup of coffee into my not-yet-awake face that adorable chattering doesn’t seem so adorable. It grates on my every nerve.

I just want to enjoy my coffee and check up on SRS Blogger BZNS in the quiet of the not-yet-awake-world. Without the repetitive chatter.

Who decided that there should be no volume control? (I really love my kid!) (I do! She’s awesome!)

However, at some point during my working day, I must have decided that not eating lunch or drinking my normal three litres of water seemed like a good idea. Sometime between picking up Kid from school, picking up last minute Thanksgiving groceries, and reassuring my mother that Korea is still outside my window I started to “green out”. I don’t know if you have ever had that experience, but I don’t ever “black out”. I get dizzy, nauseous, and my field of vision tunnels and goes green. When I was Active Duty one of my buddies who was training to go to BUD/S once told me this is a sign of dehydration, but I think it may have been a combination of things.

I couldn’t drive. I couldn’t speak, except in one or two word fragments. I managed to get out “seat…back” and “water”. I managed to communicate to The Guy that I needed water. He laid my seat back and raced back into the store to get me water while I lie there, with my hands numb, feeling trapped in my body. I could barely move, and managed to eek out a few tears as I wondered what had brought this on.

Then Kid patted my head, and instead of panicking, simply asked if I was OK. I managed “talk”, and she did. She simply did. She held my hand, and talked to me natural as could be, telling me stories about her day at school, about the green bean casserole she was going to make. She held my hand and managed to keep me calm with all of that chit-chat that my decaffeinated self can’t put up with some mornings.

As an adult when someone tells me to talk to them to distract them from something I come up with nothing. It is difficult to come up with mundane chatter. Somehow it comes so easy to a child.

Suddenly, that chatter was keeping me there. It was light, and if I had been in the position to think of it, I would have been so proud of her for staying level-headed in the situation. So I am thinking of it right now.

Finally, my water showed up, and twenty minutes later the shaking subsided, my vision cleared, and I was able to pull myself together. Magical thing now and again, water is.

It can’t be easy growing up with a parent with disabilities, because I am certain that there are times in their lives that they have to grow up faster than they would otherwise, and that there might be times that they face disappointments because of certain limitations. I know that for the most part, they grow up like most other kids, but every now and then they have to hold the hand of their parent while they are going through things (like nearly passing out).

I love her and her chatter.

You Get Proud By Practicing: Laura Hershey, Writer, Poet, Activist, Consultant, has died

I’ve just learned via email and twitter that activist, poet, and amazing woman Laura Hershey has died. I have to admit that I’m deeply hoping that someone pops up says “No, no, you misunderstand, she’s not dead!” because I just cannot currently imagine a world without Laura Hershey in it.

For some, Laura is most famous for her bravery and strength in confronting the Jerry Lewis Telethon, organizing counter-protests and bluntly exposing the hypocrisy of honouring a man who expresses such disdain towards people with disabilities as a “humanitarian”. You can read her amazing article, From Poster Child to Protester at CripCommentary.

The telethon’s hegemony over the image of disability is quite staggering. A 1996 press release issued by MDA states, “According to A.C. Nielsen, last year’s Telethon was watched by some 70 million Americans or 27 million households. The MDA Telethon — considered the granddaddy of all Telethons — ranks in viewership with the World Series and the Academy Awards. ” Those 70 million people are absorbing a message shaped by greed, deception, and bigotry.

The bigotry of Jerry Lewis is worth discussing. I don’t necessarily enjoy attacking another person’s motives, but I hear defenders saying, “Jerry Lewis is trying to help so many people. How dare you criticize his methods?” This means-justifies-the-ends argument has a long and despicable history, which I don’t need to go into here. Even more dangerous is the attitude that people who are “being helped” have no right to say how they want to be helped, or treated, or thought of. This is paternalism at its worst. By being the object of charitable efforts, do we thereby waive our right to respect, and to free speech? If people are really interested in helping me, wouldn’t they want to hear me tell my own story, rather than hearing a distorted version of it from someone who not only doesn’t share my experience, but who doesn’t even seem to want to listen to me? With the stated goal of “helping” his “kids,” Jerry Lewis is helping to keep alive the most pernicious myths about people who have disabilities. He ignores our truth, substituting his own distorted assumptions.

If our protest did nothing else, it allowed some of us the opportunity to say, “No, this is not our reality. If you want to know what our lives are like, listen to us. If you want to know what we need, ask us. If you truly want to help us, let us tell you how. And if you pity and fear us, please own that; then let us work together at changing the world so that disability will not be something to fear, but something to try to understand.”

The response to our protest has been interesting. Many people seem to resent our daring to object to these distortions, half-truths, and stereotypes. I have been called “ungrateful,” “cruel,” and “insensitive” — simply for trying to counter all this with the truth, with my truth. At the very least, I feel that the protest has enabled me and others to begin getting on record our own stories, in contrast to the misleading accounts that come from the telethon.

Laura also made videos to emphasize the work that people with disabilities were doing on their own behalf to emphasize that they were not objects of pity.


The ‘It’s Our Story’ titles roll while tinkly piano music plays. White symbols of sign language and a person in a wheelchair flash against the background, which is suggestive of a US flag, with the continental United States in the blue square instead of the usual 50 stars.

The video opens on Laura Hershey, a powerchair user wearing a nasal cannula and glasses. The title of the video is “Jerry’s Kids”, and I believe she’s referring to the group “Jerry’s Orphans”.

Laura: That’s actually a group that was started in Chicago by Mike Irvin, Chris Matthews, and several other people. And I worked with them a lot organziing these protests nationally. I think what the name says is that Jerry Lewis doesn’t have the right to claim us as his quote “kids”, especially as he’s not interested in our perspective. He completely trashes people who question or challenge the telethon approach. He’s attacked us in the press, calling us ungrateful, claiming that he bought us our wheelchairs which is, you know, completely untrue.

You know, whatever ego trip he gets thinking of himself as our saviour, or our daddy, or whatever it is he thinks, we reject that.

We’re not his kids, we’re adults, and we’re our own people. We don’t belong to him.

Laura was also a poet, whose poetry not only described her experience as a proud cripple, but also as a lesbian, and as the mother of an adopted daughter. The most recent poem of her site is titled “Adopting a Fourteen-Year-Old in the 21st Century”.

I’m sorry, I want to say something profound, something that will make it clear what an influence Laura has had, on myself, on almost everyone I know in disability rights activism, on disability studies. She’s often cited in the things I read in academia, and often cited by the people I know in activist circles. I feel such a deep and personal loss, even though I didn’t know Laura through anything more – or less – than her writing.

My heart and thoughts go out to her family and loved ones.

Laura Hershey
Laura’s column for the Christopher & Dana Reed Foundation
Laura’s article at the Huffington Post: Independence and Interdependence: Equally Important Values

You Get Proud by Practicing, by Laura Hershey, an excerpt:

You can add your voice
All night to the voices
Of a hundred and fifty others
In a circle
Around a jailhouse
Where your brothers and sisters are being held
For blocking buses with no lifts,
Or you can be one of the ones
Inside the jailhouse,
Knowing of the circle outside.
You can speak your love
To a friend
Without fear.
You can find someone who will listen to you
Without judging you or doubting you or being
Afraid of you
And let you hear yourself perhaps
For the very first time.
These are all ways
Of getting proud.
None of them
Are easy, but all of them
Are possible. You can do all of these things,
Or just one of them again and again.
You get proud
By practicing.

By 27 November, 2010.    deaths   

Today in Journalism: The Disabled

Usually I relish picking apart a crappy article in the news for this feature, but today, I want to take a moment to rant about a phenomenon so widespread in the media that I don’t feel fair singling out one poor journalist for my ire. I’m cruel, but not unreasonably so. Also, I had a hard time picking between so many examples, but the first explanation makes me sound like a nicer person, so let’s go with that, ok? Excellent.

‘The disabled.’

Almost every time I read an article covering disability in some way or another, this noxious turn of phrase comes up. ‘The disabled’ say this and ‘the disabled’ do that and ‘the disabled’ feel this way about something. It’s a dehumanising way of referring to people with disabilities, as though we are a vague, collective mass that all think, behave, and act in the same way. It assumes that our experiences are shared and universal. ‘The disabled,’ you know, they are all alike.

This is not the first time this subject has come up here. Anna wrote about it in June.

This contributes to the de-humanization of disabled people. “The disabled” aren’t people, they’re a big collective noun who can’t be reasoned with, can’t be talked to, can’t be considered – they’re just to be placated, and dealt with, and put out of our minds as quickly as possible in case they sue us.

So did I, for that matter.

We are not a monolith. Or a collective noun. Nor are our disabilities the sum total of our identities.

Every time I encounter this phrasing, I am reminded that people think we are interchangeable, that we do not think and act independently, that we are just a kind of amorphous mass over there somewhere. You know. The disabled. I need look no further than the comments section of this very site to know that people with disabilities do not, in fact, agree with each other on everything. That we do not, in fact, have the same lived experiences. Nor do we conceive of disability in the same way, have the same ideas about how to address issues we deal with in our daily lives. I, for example, cannot be interchanged with commenter Astrid. Astrid and I even share some disabilities! But we are not members of the Borg.

People treat us like we are. It is assumed that accommodations are one size fits all, for example, which has real world consequences for people who need accommodations. Writing off an entire group of people with a collective noun is a neat way to shove them in a box and not think about them, and when that collective noun is in widespread and acceptable use (a number of journalism style guides approve ‘the disabled’), society internalises the attitudes that go along with it.

The media seems to  have learned that it’s not ok to say ‘the women’ or ‘the gays,’ referring to an entire group of people with a collective noun, like they are a flock of sheep. It has been suggested that this is not very helpful, that it tends to strip people of their humanity. Yet, the same has not been extended to people with disabilities. We are still ‘the disabled,’ viewed as a generic collective, in most media outlets. Exact phrasing varies from journalist to journalist and some are better about it than others, clearly making a conscious choice to humanise us by using a more appropriate phrasing when referring to members of the disabled community.

‘The disabled’ is not just a problem because it’s a reminder that people think we are all the same. It is also a reduction of our identities to our disabilities. And people feel free saying it about individual disabilities, too. ‘The bipolar.’ ‘The borderline.’ ‘The paraplegic.’ And so on. This framing reminds us that this is all we are; that our identities consist wholly of a single noun. You can aspire to nothing in life because you’re ‘the disabled.’

Asking people to say ‘person with…’ or ‘disabled person’ sounds nitpicky. It sounds fussy. We get challenged on it all the time. But it’s not unreasonable. It’s a request that people consider the fact that a huge percentage of the population is disabled, and there’s no way that, say, 20% of the people in the United States think, behave, and feel in exactly the same way. We are all individuals. We are all different.

We are not ‘the disabled.’

Accessing Sexual Health Part One: Barriers To Getting There

I gave a bit of a talk recently on what I viewed as the barriers to sexual health and education for people with disabilities, discovering that I have a lot of thoughts about the barriers not only to sexual health but to all levels of health care when one is disabled. These can vary from the difficulties in making appointments to waiting rooms where people who use wheelchairs are told to wait in the hallway.

Sexual health is something that weighs quite heavily on my mind. As we’ve highlighted here (and many other bloggers have highlighted elsewhere), people with disabilities, especially women, are vulnerable to sexual abuse.

Over the next few posts (the other two will be available next week), I wanted to highlight some the barriers I perceive in people with disabilities in getting access to sexual health-related care, and I encourage people of any gender, should they wish, to detail out their own struggles or successes in receiving sexual health care. I would remind commenters, though, that people do search and read comments, and if they wish to give their stories anonymously, that’s perfectly acceptable.

The two things I want to highlight today are getting an appointment, and getting into an appointment.

Over the past couple of months it’s been brought intimately home to me how difficult it can be to get a doctor’s appointment for any reason if you can’t use the phone. I’ve been unable to hear very well due to an ongoing ear infection, and Don has a frozen vocal cord, meaning he cannot speak much above a whisper. Trying to book an appointment to get my ear checked has been an effort in frustration: neither my GP nor the ENT clinic I was referred to have any indication of a way to book an appointment that doesn’t involve using the phone.

When I worked in Health Care I did receive relay calls. For those not familiar, d/Deaf or Hard of Hearing people can use relay calls where they use a TTY phone. They contact the relay center via TTY, and the relay center calls the person you wish to speak to. My understanding is that you then type what you want to say, and the relay operator repeats it to the person who you are talking to. They then type up everything the other person says. (The speaking person says “go ahead” when they want the text-part sent.)

[Interestingly, I only learned how to take Relay Calls when I worked in a call center for a major wireless company in the US. No one when I worked in health care discussed Relay Calls or how to handle them, although in my experience the operators were very kind and forthcoming with that information.]

However, phone issues are not limited in any way to people who may be able to take advantage of Relay Calls. Relay Calls are not appropriate for Don’s needs as someone with a frozen vocal cord, for one example. There are also people with audio processing disorders, people who have phone anxiety issues that make using the phone difficult, if not impossible. There are people whose phone-related issues are temporary rather than permanent and thus they don’t have the equipment available to take advantage of something like Relay Calls. These sorts of barriers to accessing health services, especially sexual health services, can cause people to just give up on the whole enterprise.

One solution to this would be for sexual health clinics and doctors offices to consider making people aware of alternative means of contacting them for appointments, be this via email or fax or even an online appointment booking service. While I have no doubt that these are available currently, I have never seen these services advertised. Certainly when trying to book my ear appointments I would have loved to have done it via email, since I couldn’t hear, which made making the appointment difficult.

Another seemingly simple problem that can be a barrier not only to any health service, but any building at all, is the dreaded Wheelchair Lift.

I mean, let’s pretend that every building you’d want to go to for health services was specifically wheelchair accessible (Note: This is not as true as one might imagine.) In many cases, this will mean a wheelchair lift has been added to one of the stairwells.

As many people who use wheelchairs can tell you, wheelchair access is often “in the back”. This can mean that you need to call ahead to let them know that you’ll be there in five or ten minutes and could someone be troubled to let you in? These doors are not always cleared of snow. The one for one of the buildings that Don’s had to enter doesn’t have a full sidewalk going up to it, so he has to deal with mud when it rains. It rains a lot in Halifax.

However, wheelchair lifts, bless them, do not really help a lot of people with other mobility-related disabilities. You can’t use a wheelchair lift if you use a cane. You can’t use it if you use a walker. Occasionally people in these situations will be allowed to use a chair and sit on it while the lift takes them up the flight of stairs, but this is not always something people are willing to do.

Again, these are physical barriers that prevent people with disabilities from accessing health services. They’re not deliberate, but they have long-term consequences that are easy to forget.

Recommended Reading 26 November 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.
National Times: Why I’m not in the queue for the disabled loo

Occupational Health and Safety regulations and social inclusion and participation don’t even belong in the same sentence, yet the words are more closely linked than people know or want to acknowledge. What annoys and frustrates me is that the disability system has a “no lift policy” and, as yet, makes no attempt to modify public toilets to make them truly accessible for everyone. Regulations designed to protect support workers — and yes, the people they support also — are understandable. However, regulations that for many people mean not being able to use bathroom facilities outside of their home is a loss of human dignity.

Most public toilets do not have lifting hoists in them, but, unfortunately this is not part of the law. Yet it could easily be something corporate venues include. For people with physical disabilities who cannot weight bear, the lack of hoists, means wearing continence briefs, which cannot be removed until one is at home.

Pharmacy News: Pharmacists negative about schizophrenia

The survey, which was sent to 750 community pharmacies in the US to assess pharmacists’ attitudes towards mental illness and their willingness to provide services to patients, revealed pharmacists were more open to counselling customers with depression or schizophrenia if they had less negative thoughts about mental health disorders.

“Compared with physicians, pharmacists perceived themselves as having less negative attitudes towards those with depression, but greater negative attitudes towards individuals with schizophrenia.

The Sydney Morning Herald: Passengers ‘left on planes and forced off flights’

The disability commissioner, Graeme Innes, says people have been left on planes for 45 minutes until cleaners have found them because staff have failed to assist them to disembark. Others have been lost in terminals or bumped at check-in because of limits on assistance dogs per flight.

Mr Innes blamed staff cutbacks and called for the government to step in and regulate to stop airlines ignoring the needs of disabled passengers.

Airlines were breaching the Disability Discrimination Act, Mr Innes said, and called for tougher aviation safety laws.

”I don’t think airlines are taking this stuff seriously enough. I think that the government needs to regulate … They have had 17 years to get this stuff right, but they are still not getting it right,” he told the Herald.

Jetstar caused an uproar last year when it forced the Paralympian Kurt Fearnley to check in his wheelchair as luggage, leaving him to crawl through Brisbane Airport in protest at the unsuitable alternative wheelchair offered to him.

NPR: Finding Support for Children With Disabilities

Al Etmanski is a veteran community activist, and after his daughter Liz was born with Down syndrome, he turned his attention to the needs of those with disabilities and their families. Etmanski was feeling pretty good about the work he was doing in Vancouver, British Columbia, until he was approached by three men at a party. All were in their 70s and had children with disabilities.

Etmanski says the men told him they were pleased with his work helping younger parents. But they asked: “What about us?”

Etmanski wasn’t sure precisely what they meant.

The men told him their adult children were OK now, but they were worried about what would happen to their children in the future. Existing programs and services wouldn’t keep their children safe, they said.

Etmanski says the older parents told him: “We want people to be our eyes and ears and arms and legs when we are not around. We do all kinds of things that paid staff don’t do. And who is going to look after our kids when we are gone?”

Oregon Live: A year after civil-rights complaint filed, Hilsboro county boy with Autism continues classes without his service dog

In January, a story in The Oregonianabout Scooter received international attention, landing Wendy Givens and Madison on shows such as CNN’s“Nancy Grace.” Commenters online debated for days the pros and cons of allowing service animals in schools for kids with disabilities such as autism. Service dogs commonly assist people who are sight or hearing impaired.

The issue between the school district and the Givenses is more complex, pitting special education law against the Americans With Disabilities Act.

Scooter, whose given name is Jordan, is prone to violent “meltdowns,” especially when startled. Sometimes the 5-foot tall, 150-pound boy runs flailing at people, including classmates. Earlier this week, he ran across the room and punched a student, Givens said.

When he’s with Madison, Scooter wears a belt that is attached to a harness on the shepherd. When Scooter tries to bolt, the dog sits or digs his claws into the ground and pulls back, stopping the boy.

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.

By 26 November, 2010.    recommended reading   

In praise of speech-to-text software

One thing that has helped me quite a bit as a blogger, writer, grad student and person with chronic pain subject to flare-ups has been speech-to-text software. The basic idea is fairly self-evident: You install the software, plug in the headset that comes with it, open up the word processing program of your choice, and start talking.

Repetitive motion is one of those things that can be the bane of one’s existence if that person happens to have chronic pain issues; while there are people who might say, Oh, typing at a computer can’t be that painful or Just work through the pain or some other ridiculous piece of “advice,” typing can, at times, be enormously painful or draining for some folks with pain issues. No matter how much one may want to complete a piece, post or assignment, sometimes it just will not happen due to pain. When it feels like your hands are encased in cement blocks, there is no “working through the pain.” Having your hands and wrists feel like they have been set on fire by pain when you are on a deadline — like a lot of circumstances surrounding pain flares — can be excruciating. It’s kind of like having your hands and wrists feel like the Human Torch, but without any of the cool superpowers.

With speech-to-text, the additional pain brought on by repetitive typing is significantly reduced, as it takes at least some of the typing (but not editing, as I will address below) out of the equation. There are some additional issues to consider, however: one is “fibro fog,” the name given to some of the cognitive effects of a fibromyalgia flare, which can, for the person experiencing the flare, make it difficult to put thoughts, words and sentences together with anything resembling coherency. This is more of a condition issue than one that has to do with typing, but it’s fairly obvious as to how fibro-fog could impact the use of text-to-speech: if your thoughts are jumbled because of pain and fatigue, it’s likely that they will be just as jumbled regardless of whether you are typing or speaking into a text-to-speech headset. I’m fairly lucky with fibro-fog myself, as it tends to be rather mild unless I am experiencing a pain flare that feels closer to acute pain than chronic, but typing is one of those processes that can seem bizarrely confusing during a massive pain flare-up (and the whole “simple things as confusing” side effect is damn near impossible to truly understand unless you’ve been through it).

Of course, there are some aspects of text-to-speech software that are less than perfect: similar to the iPhone’s auto-correct feature (some of the amazing slip-ups of which have been documented by websites such as Damn You Autocorrect),  speech-to-text software can “read” one spoken word or phrase as something else entirely, sometimes producing hilarious (or irritating) fragments that often make no sense within the context of what you are actually writing. My personal favorite thus far has been my speech-to-text program “translating” Judith Butler as Judas butt lark, which made me wonder if I need to work on my pronunciation skills if only for the convenience of my software program.

There is also the cost issue: many speech-to-text software programs are expensive. In a utopia, everyone who could benefit from text-to-speech programs would have a reliable and fairly-priced one ready for use. I’m one of those weirdos who thinks that accessible technology should not be something available only to those who can afford to pay for it, but that, unfortunately, is most likely a long time coming.

Language Interpretation and Health Care

As promised, here is a post and a place to discuss policies and procedures about language interpreting in a health care context. Unfortunately, it is going to be a slap dash post as I’m knee deep in a number of things, both professional and personal, including preparing to clean ALL THE THINGS and cook a great number of the things for the upcoming U.S. Thanksgiving.

So. Here are some assorted thoughts and resources on interpretation policy!

My first and most prominent thought is the absolute importance of having interpretation done well. It is essential that the health care provider be able to understand the patient’s reported symptoms and experiences and sensations, their medical history, their concerns, and their desires and goals for the medical treatment or care. It is also essential that the patient be able to understand the instructions and questions of the provider and discuss any potential treatment options, including tests, medications, and therapies. Without accurate and competent translation, the provider cannot understand what is wrong and the patient cannot understand how it will be addressed. While there are times that medical treatment takes place without communication – primarily emergency situations when the patient is unconscious – that is definitely the exception rather than the rule and is not a good model for non-emergency care or even most emergency care. Communication is crucial and should be important to all individuals involved in health care transactions. In other words, bad communication could kill people.  So, this is an enormously important issue, both to people who do not speak English (or whatever the predominant language is where they are) and to people with hearing impairments and d/Deaf people.

Problems with interpretation:

In my experience, there is usually a vast gulf between interpretation policies as written and as implemented in practice. Even when a policy requires use of a trained and certified interpreter during all interactions, with clear instructions on when and how to obtain an interpreter, there will be interactions where no interpreter is present. (See, for example, this recent audit of interpreter use by New York City police finding that officers routinely failed to comply with the existing interpretation policy.) This is in large part because of logistical difficulties with interpreter use that I’ll discuss below and seems to be a feature of nearly every interpreter policy. This kind of built in failure rate makes me inherently nervous about relying on interpreters.

Interpreter policies are logistical nightmares, in large part due to the difficulty of matching language competence to language need that we discussed last week. This is especially true in areas with significant language variation – the court where I worked had several Spanish interpreters and an Armenian, Russian, Farsi, Cantonese, and Tagalog interpreter on call all the time, and still had incidents when a litigant needed interpretation in a language that wasn’t available. This is even more difficult in an emergency room situation, when it is impossible to anticipate when a need will arise and there is no way to just have everyone wait for a bit until an interpreter gets there. This leads to using interpreter phones – where the provider and patient use a handset to speak to an off-site interpreter, which are both expensive and clunky. Even if an interpreter is on staff, finding them in the building, pulling them out of a meeting or their break, and getting them to the desired location to provide interpretation is often a hassle.

There also needs to be an entire infrastructure around training interpreters and measuring and certifying their competence. Language knowledge is not enough for competent interpretation, interpreters must also be trained in interpretation skills and professional standards. There is a lot to well-done interpretation – positioning yourself so the provider and patient can maintain eye contact, knowing when and how to ask clarifying questions, providing concurrent interpretation without interrupting the flow of the conversation. This training and certification requires time and money.

The limited-English-proficient patient has very limited ability to address problems in interpretation policy. To address the failure to provide an interpreter at all, they can provide their own, usually by bringing a friend or family member to do the interpretation. This is a big problem for a number of reasons. First, there’s no way to know the competency of the friend or family member in interpreting, especially with specialized medical vocabulary and concepts. When the doctor tells me that the leg pain I am experiencing could be a rupture of my plantaris tendon, plantar fascitis, or tendonapathy, is there any probability that my sister will be able to interpret that accurately? (Personally, I’d have trouble identifying even what portion of the leg was being discussed if I didn’t have Medline open to get those terms in the first place.)  Second, this is a major confidentiality issue. If I am going to the doctor to discuss genital warts, I am unlikely to be as frank or forthcoming if my brother is my interpreter. This is especially true for medical issues around sexuality, pregnancy, mental health, and injuries from domestic violence, when discussing symptoms and experiences can open the patient to strong stigma effects. This is even more problematic if a child is serving as an interpreter and being expected to interpret discussion about conflicts between his parents or his mother’s suicidal thoughts, which could be dangerous or traumatic for the child.

Overall, I am most concerned about the inherent non-compliance caused by the logistical hassle and the patient’s agency being limited to bringing a friend or family member to interpret, and it is these issues that make me prefer language proficient medical professionals rather than reliance on interpreters. I also think that language proficiency for providers would help with cultural competence issues, but that’s more a side effect.

So – have at it! Interpretation? Language proficient providers? What makes sense? What do we want?

Recommended Reading for 25 November, 2010

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

disability is a feminist issue by Wheelchair Dancer:

This conversation is an icon in the difficult relations of disability and feminism.

Study: Too Many Fat Women Don’t Even Know They’re Fat by Cara at The Curvature:

Trying to define and impose your definition of normal on other people — whether it be in relation to gender, sexuality, physical ability, neurological workings, weight, or some other category entirely, is alienating, damaging, and oppressive. There’s no way that defining people in opposition to “normal” and telling them that they must become normal for their own good is not harmful.

Access and Academia, Again by Liz at Dis/Embody:

Though it’s lamentable that this is necessary, twenty years after the ADA, these cases are exactly the kind of potentially broad-ranging challenges that could strengthen the civil rights protections of the ADA and the accessibility processes used in US institutes of higher education.

Boy With Disability Unable To Leave Apartment by Katie E. at Women’s Glib:

Denial of accessibility is a widespread issue for people with disabilities. Jaime’s education and right to leave his apartment is seen as trivial to the leasing office, but it is very, very important. Why should he be treated as a second-class citizen? Why don’t all people have a right to education?

In a first, Census 2011 to mark people with multiple disability by Surbhi Khyati at The Indian Express:

For the first time in India, people with multiple disability will be a part of Census 2011. The census will not only include the number of people in each disabled category but also recognise diseases like dyslexia and autism as forms of disability.

That’s all for this time. Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited.

Recommended Reading for Wednesday, November 24, 2010

Hello Wednesday my old friend. Why I can’t remember that it’s Wednesday until late in the day (at least in my time zone), I will never know.

I was going to link an article about a showcase of artwork by Deaf and Hard-of-Hearing artists, and then when I re-read the article realised the only artist the article highlighted was a person who is neither d/Deaf nor hard of hearing, but wanted to show art in support of the project. I find that a really…. interesting…. way of framing a show that’s supposed to be about highlighting the work of artists with disabilities.

Instead, I’ll point your attention towards a presentation that Deaf photographer Stacy Lawrence gave to the Rochester School for the Deaf.

Katie at Muni Diaries: My Disability on Muni

I get on the train in the Sunset/Parkside district and ride it all the way in. My disability is largely invisible unless I’m barefoot or wearing a skirt that exposes my scar-covered right leg. I get dirty looks from older riders when I don’t get up to allow them a seat; I look like a perfectly healthy 22-year-old woman. I sit in the seat, repeat to myself “you’re handicapped and have a right to sit here” and stare at my foot-and-a-half while clutching my cane with white knuckles.

Jail no place for FASD offenders, ministers told

Citizens with FASD make up only 1% of the Canadian population but account for an estimated 40% to 50% of all prisoners. People born with FASD have difficulty learning new behaviours and controlling behavioural impulses.

Theatre Blog: How captions stopped plays being seen and not heard

Captioning is offered on a regular basis by major subsidised and commercial theatres all over the country. You’ll see “CAP” or “STAGETEXT” in the flyers. Stagetext is the name of a charity that made captioning happen big time. Over the past 10 years they have delivered captioned shows, and trained theatres in how to provide captioning in-house. Captioning has meant a big growth in deaf or hard of hearing theatregoers, for whom theatre is accessible like never before. Stagetext also offers deaf and access awareness training to theatre staff, including front of house staff, to help make a theatre visit more enjoyable and less stressful for deaf people. Clear communication and a friendly face work wonders. It’s great to see deaf and hard of hearing people talking passionately about shows with family and friends, and even daring to say what utter rubbish they’ve just seen.

Minister Responsible for Disability has Inaccessible Office Diane Finley, you are driving me up the wall.

Yes she piloted the Registered Disabilities Saving Plan through Parliament. That helps the children of upper-middle class Canadians save for the time when the parents have passed on. Those lucky few children with disabilities, then adults, face the bleak future of struggling to exist in Canada’s disability wasteland. The program is useless for most Canadians with disabilities who are struggling to survive. Where are they going to find disposable income to save for their childrens’ income?

Canadians with disabilities who can no longer work are subject to the worst conditions of poverty of any group. They form the largest number of people in Canada on social assistance.

The only Federal income program that helps them is the Canada Pension Disability which maxes out at $13,000 annually. Most Canadians on disabilities and CPP are receiving less than $10,000 a year. It doesn’t take an economist to understand survival on $10,000 is punishing poverty.

[Don has a RDSP. Don is also the child of upper-middle class parents. It’s also really really firmly designed with parents of children with disabilities in mind, much like the Registered Education Savings Plans. For example, our bank refused to allow Don to manage his RDSP over the phone, through ebanking, or anything else except in person. The bank building is only “wheelchair accessible” in certain areas, which doesn’t include the areas you need enter in order to manage your RDSP in person. Other banks have different policies, of course, but there’s nothing quite like being told an investment is “for you” when you can’t even get into the building to manage it.]

Mariness: Body scanners and pat downs

With the body scanner, however, you have to be able to stand still. Since I can’t do this without at the very least wobbling and swaying, I now have to do the patdown in my wheelchair.

Smackie the Frog:My TSA Experience

This got me to thinking, though. Am I going to always be subjected to the “enhanced pat down” because of my medical device? I don’t even so much object to the backscatter x-ray machines, and I don’t have any problem with them doing the swab on the device. So I did some research and talked to other people with the insulin pumps who have also flown, and they have had to deal with the same thing I did. One lady was even told by a TSA supervisor that if you have a medical device like an insulin pump, you have to go through the “enhanced pat down”. No choice.

American Coalition of Amputees: ACA calls for Improved Screening Procedures for TSA

“I had just been put in the Plexiglas screening booth,” said Peggy. “My 4-year-old son was made to sit across from me, crying because they would not let him touch me. Everyone was looking at us. Then the TSA agent asked for my prosthetic leg. I knew they could wand my leg, but he insisted on taking it from me. And if that wasn’t humiliating enough, he asked for the liner sock that covers my residual limb, saying I had to give it to him. I felt pressured to give him my liner even though it is critical to keep it sanitary. I was embarrassed to have my residual limb exposed in public.”

There have been several news stories about how the changes in the TSA in the US have affected passengers with disabilities. Here is only a sample, I assure you:

Bladder Cancer Survivor Recounts Humiliating TSA Screening See Also: TSA pat-down leaves traveler covered in urine

Teen says TSA Screener opened sterile equipment, put life in danger

TSA makes Cancer Victim Remove Prosthetic Breast