Category Archives: activism

Interpreters and Emergency Rooms

I recently came across a news article about a lawsuit by several d/Deaf or hard of hearing people who were denied interpreter services in emergency rooms. It sounds both infuriating and terrifying:

One deaf hospital patient in Jacksonville Beach said she was given a stuffed monkey instead of the sign-language interpreter she requested for hours. Feeling isolated, she finally asked nurses for something to hold.

Another said she thought she was being denied medical care because there was no interpreter to explain why they needed her to wait in a hallway at Baptist Medical Center South. She later learned hospital staff lost a list of sign-language interpreters her mother had given them.

A third woman couldn’t hear when emergency workers at Baptist Medical Center downtown called her name.

The three women are among seven hearing-impaired emergency-room patients suing Baptist Health Systems for violating the Americans With Disabilities Act by failing to provide qualified sign-language interpreters. The lawsuit was filed in federal court last week by Jacksonville Area Legal Aid. Legal Aid attorney Sharon Caserta,  who works with hearing-impaired clients, said the pattern of complaints at Baptist facilities from 2006 to 2009 indicated a breakdown in services that denied deaf patients full access to care.

She said the act requires interpreters or effective auxiliary aids to be provided if needed for communication with medical professionals. The U.S. Justice Department has interpreted the law to mean a one- to two-hour response time is reasonable after an interpreter has been requested, Caserta said.

In Northeast Florida, she said, that shouldn’t be an issue because of a half-dozen organizations that provide interpretive services and the proximity of the Florida School for the Deaf and the Blind in St. Augustine. But Caserta said her clients never got interpreters and, if they didn’t have friends or family with them, had to fend for themselves at Baptist facilities.

Many are now scared to return to Baptist or any emergency room, she said.

These problems are not limited to that hospital, or even to the United States. According to one survey in the UK, “70% of deaf respondents reported being unable to have access to an interpreter when they attended an accident and emergency department.”

These incidents would be bad enough if their impact was limited to the incident itself. Being denied the right to communicate in an emergency situation is beyond unacceptable. It denies people the right to understand what’s happening to them. It denies them the ability to consent to treatment or make any decisions or have any agency at all in their treatment.

Even worse, these incidents undermine the reliability and usefulness of the health system itself. As the article above mentions, many of the plaintiffs “are now scared to return to … any emergency room.” This is echoed by the UK survey, which found that “communicating with health care professionals was such a struggle that 28% of deaf people responding to one survey were left so confused and dissatisfied with their inadequate GP health care that they avoided seeking medical help.” These people have learned that the health care system is unwilling to communicate with them in their time of urgent need. Is unwilling to take the time or make the effort to treat them as autonomous people participating in their own care.

In a demonstration of intersectionality, the facilities and areas in the US that have the best policies and practices about providing sign interpreters to d/Deaf and hard of hearing people are those with good policies for accommodating people with limited English speaking proficiency. (I would expect the same holds true for non-US locations which accommodate folks who don’t speak the primary language.) These places have created an infrastructure where interpreters are available and staff are trained on how to access them, and they’ve prioritized communication access in their facilities.

A conversation

Recently, I was on the commuter train home. I happened to be reading Susan Schweik’s book Ugly Laws: Disability in Public for a research paper. Two middle-aged women sat down opposite me, and one inquired as to what book I was reading.

Me: It’s a book about 20th-century ugly laws in the U.S.

Woman #1: What’re those?

Me: Oh, they were regulations that prevented people with visible disabilities from panhandling in public, but more generally, they also kept people with disabilities out of the public eye.

Woman #2: Wow, that is so interesting! Are you in school?

Me: Yes, I’m reading this for a grad school paper.

Woman #1: You’re lucky you’re in grad school! The great thing about being in school is that you get to learn about things you might otherwise never learn about.

Me: Yeah, I suppose so.

Woman #1: And…why are you interested in that topic?

Me: I’m interested in feminist theory and disability, and how those things intersect with race, gender and class, and other stuff. That’s the short version, anyway.

Woman #1 [After a long pause]: Of course, I didn’t mean to imply that you are disabled or have a deformity

Me: Uh, okay. [Pause] You can’t see it, but I do have chronic pain.

And the conversation sort of stopped after that. For some reason, I suspect that this is not an uncommon occurrence.

Open Post: Helen Keller Mythbusting Blogswarm Day!

Description below

Image: A grey banner divided in three parts. A photo of a young Helen Keller is in the center. On the right, it reads “Political Activist. Radical Thinker. Suffragist. Pacifist. Journalist. Socialist. Who was she?” On the left it reads “Helen Keller Mythbusting Day 2010”

Today is awesome Helen Keller Mythbusting Day!

As I wrote earlier:

A few years ago someone on a feminist site posted a list of the top 100 historic women in the US, and the list included Helen Keller. A commenter mentioned being surprised to find that out, because… well, what did Helen Keller actually do?

The answer to that question is what this Blogswam is all about.

First, I’d like to thank the wonderful, amazing, and totally awesome Jhameia of Intersectionality Dreaming for making our awesome banner while travelling across Canada! Thank you, Jha, you are awesome!

Second, if you post something for Helen Keller Mythbusting Day, please leave a link here in the comments.

If you’d like to participate, but aren’t sure how, check out the Intro Post, which has ideas and links for more information.

Please check back throughout the next few days!

Previous Posts about Helen Keller on FWD:

Feminist Icons
Subverting the Narrative

Avoidance

Building on what Chally talked about in her post about doing fine, I wanted to discuss some of the disability aspects of my recent semi-absence. Sometimes I feel like thinking about, reading about, writing about, arguing about, disability issues can become overwhelming for me. I feel that there are so many problems – ableist policies and laws and governments and businesses and people and attitudes and media portrayals and interactions and opinions and splainers. And a horrifyingly large number of instances of people with disabilities being abused and battered and humiliated and ignored and erased and dismissed. Each of those things seems like an immovable stone that fit together to form a wall that is beyond insurmountable.

Even thinking about everything that’s overwhelming feels overwhelming. (And this, of course, is part of the effect of the kyriarchy – to be so overwhelming and monolithic that it forces conformity, punishes people for differences like being a PWD, and places immense pressure on them to conform as much as possible to the norm.)

So when this happens, I notice myself avoiding disability related topics. I keep posts on disability issues unread until they start building up in Google Reader. I somehow don’t get around to reading that article or book on disability activism I had bookmarked. Someone I’m around in a casual setting says the R word and I let it go by. I pass as much as possible for TAB and neurotypical – even to myself. I just ignore disability – in general and mine specifically – as much as possible.

I noticed that my avoidance started right around the time I started working on a work project related to domestic violence. Working in that area always makes me aware of how many people, predominately women, are subjected to horrifying abuse on a daily basis. In the past, I’ve had the same kind of overwhelmed/avoidance response to feminist issues, when it feels that the patriarchal structure is too entrenched and too powerful to fight.

In other words, feeling vulnerable about domestic violence and sexual assault makes me feel like I cannot risk being vulnerable about disability, so I try as hard as possible to ignore it. I know that I am doing this to protect myself. But I do not like that protecting myself means ignoring disability issues or feminism. That protecting myself means, to an extent, ignoring part of who I am. Not just in the way I present myself to the world, but even in how I think about myself in the privacy of my own head.

That makes me angry. It makes me angry that retreating into my shell is coping mechanism brought on by the infinitely-headed hydra of ableism and sexism. It makes me angry that a necessary reaction to the frustration of engaging in disability activism is to take a break from that activism and to momentarily stop identifying as a PWD. (Or as a DV survivor. Or as whatever else is making me a target for kyriarchical oppression.) Basically, I get angry that the kyriarchy works, that even my efforts to stop being hurt by it are intrinsically shaped by it. That my life is inherently a response to it. That I cannot seem to exist outside of it.

Fucking kyriarchy.

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…”

Announcing: Helen Keller Mythbusting Blogswarm!

A banner that has an image of Helen Keller in the center.  On on side it reads: Political Activist.  Radical Thinker.  Suffragist.  Pacifist.  Journalist.  Socialist.  Who was she? On the other side it reads: Helen Keller Mythbusting Day 2010
Image Description: A banner that has an image of Helen Keller in the center. On on side it reads: Political Activist. Radical Thinker. Suffragist. Pacifist. Journalist. Socialist. Who was she? On the other side it reads: Helen Keller Mythbusting Day 2010″

I learned that Second Life and Virtual Helping Hands are hosting a Helen Keller Day on Second Life on June 19th.

Helen Keller Day is a day set aside for information acquisition, education, exploration of employment opportunities, social engagement, and enjoyment of arts and entertainment. There will be vendors, employers, presentations, and pure, unbridled fun.

I think this is awesome. If I played Second Life, I would be all over this.

It did get me thinking a lot about Helen Keller, and the way people talk about her and use her legacy – something I’ve discussed on FWD before, in Feminist Icons and Subverting the Narrative.

A few years ago someone on a feminist site posted a list of the top 100 historic women in the US, and the list included Helen Keller. A commenter mentioned being surprised to find that out, because… well, what did Helen Keller actually do?

The answer to that question is what this Blogswam is all about.

What’s a blogswarm?

On the appointed day (or there abouts) – in this case, June 19 – people post about Helen Keller. Ideally, they’ll link back to a master post (which I will be hosting here on FWD) and leave a link indicating their participation on the master post. Then, people will be able to see lots of posts about Helen Keller in a variety of places from a variety of points of view.

Okay, but I don’t know much about Helen Keller. Are there some resources so I can learn?

Yes!

This is just a very short list. Your local library may have many books. I never resist the chance to push Lies My Teacher Told Me by James A Loewen, which talks about Keller in the first chapter. The American Foundation for the Blind has a selected Bibliography of books by and about Keller, but I have not read them so I have no personal opinion on them.

But there are other women with disabilities connected to Helen Keller’s life, and I don’t think they get enough attention either. Can I write about them as well as or instead of Keller and still participate?

Yes! In fact, I think it’s an important part of the mythbusting about Keller to talk about Anne Sullivan, who was blind for parts of her life, Polly Thomson, who was a companion and aid to both Sullivan and Keller in later years, and Laura Bridgman, who was also deaf & blind and was “famous” before Keller. And this list is pretty US-centric, and entirely white. Bust the myth that the only women with disabilities doing anything of interest in the nineteenth and twentieth centuries were white women from the US! A very short list: Frida Kahlo, Jhamak Ghimire, Ragnhild Kåta, Theresa Ducharme…

I also think that it’s relevant to talk about Keller’s legacy, and how the treatment of her story – in productions like The Miracle Worker and the oft-repeated story of “the hand in the water” – affect perceptions of people with disabilities, especially blind and d/Deaf people, today. Brownfemipower linked to this discussion of Blind Rage and the Legacy of Helen Keller on TheGimpParade, as an example.

I’m really not up to participating, but I want to be supportive. What can I do?

Spread the word! Tell a friend! Read posts! Link others to posts! Bust your own myths, so that the next time someone says something ignorant about Keller or the work she did, you can gently (or not!) correct them.

I want to participate! But I don’t know if I can on June 19th.

Then write something on another day. The reason I suggest doing it all on the same day is because blogswarms will push across the blogosphere and people will notice them all at once. But please don’t feel obligated or that you’ve “failed” if you don’t write something about Mythbusting on the day.

Also, don’t feel you have to write something new. If you’ve previously written something about this and would like it to get some more attention, feel free to link it as well.

So, now what?

Well, on June 19th I’ll post up an open post about Helen Keller Mythbusting Day here on FWD. Folks can drop their links in right away – my goal is to have it open as early on the 19th as possible. Check back throughout the day to see what posts people have written!

I hope to see lots of awesome posts on June 19th!

Quoted: Audre Lorde

The supposition that one [group] needs the other’s acquiescence in order to exist prevents both from moving together as self-defined persons toward a common goal. This kind of action is a prevalent error among oppressed peoples. It is based upon the false notion that there is only a limited and particular amount of freedom that must be divided up between us, with the largest and juiciest pieces of liberty going as spoils to the victor or the stronger. So instead of joining together to fight for more, we quarrel between ourselves for a larger slice of the one pie.

— “Scratching the Surface: Some Notes on Barriers to Women and Loving” (1978), in Sister Outsider: Essays and Speeches (The Crossing Press, 1984)

Call to Action: Tell Parliament to Stop Discrimination against people with disabilities who immigrate to Canada

An awesome way to guarantee that you will not be allowed to immigrate to most countries – even if you otherwise completely qualify – is to have a disability, or have a disabled immediate family member.

Despite the Canadian Charter of Rights and Freedoms explicitly guaranteeing that laws in Canada cannot be written to discriminate against people with “mental or physical disabilities” (Section 15 of the Charter), Canada’s Immigration Act allows someone who otherwise passes all of Canada’s immigration requirements to be denied immigration because they “might reasonably be expected to cause excessive demand on health or social services”.

What has this meant in practice? Well, in 2009 Chris Mason, an immigrant from the UK who was injured on the job while working legally in Canada, was deported back to the UK because of his disability. In 2010, Ricardo Companioni was initially denied immigration to Canada from the US because of his HIV-positive status, but managed to argue in Federal court that he and his partner would pay for their drug treatments and thus not be part of Canada’s care system – a solution that is not available to many people. In May, the Barlagne family lost their appeal to be allowed to stay in Canada, as their youngest daughter has Cerebral Palsy. The reasoning was that the court did not believe the Barlagnes would be able to pay for their daughter’s care.

None of these stories are unique. Even when the Bill was being debated in Parliament, Members were bringing up concerns about how the “excessive demand clause” would affect people whose families had disabilities. In 2000, when Wendy Lill, a Member of Parliament, asked:

We have a charter of rights which talks about each Canadian being entitled to equality under the law. The Will to Act Task Force, which was established several years ago, talked about equality of citizenship for persons with disabilities.

Clause 34 talks about how a foreign national or other permanent resident would be inadmissible on health grounds if their health condition might reasonably be expected to cause excessive demand on health or social services. This is the only clause in the bill which seems to me would in any way relate to a person with a disability making an application to come to Canada.

I would like to know if a family with a child who has a disability such as Down syndrome or cerebral palsy would be accepted in this country. [emphasis added]

She was assured by the then-in-power Liberals that:

I think it is internationally accepted, in the Geneva convention and other statutes, that the best interests of the child can indeed be defined. In the case of a disabled child, I believe that the intent is to prevent abuse. The abuse might be that the only reason for someone wanting to come to Canada would be to seek free health care of some type.

However, in the case of family reunification, if we are talking about bringing a new family to Canada, if a child has a disability, frankly, I am absolutely confident, having met the men and women who work in citizenship and immigration, that we would take all of that into account and we would not allow it to stand in the way. [emphasis added]

I’m very happy for the no-longer-in-power Liberals that they were certain situations like the Barlagnes would never happen in Totally-Awesome-To-People-With-Disabilities Canada, but since we live in this Canada, I think their optimism was misguided. As has been amply demonstrated by reality.

The Council of Canadians with Disabilities has recently written yet-another-letter urging the Hon. Jason Kenney, Minister of Immigration, to review the “excessive demand clause”. You can read the letter in full at their website.

I have adapted their letter to send to Mr Kenney, as well as my MP, and provide that letter for my fellow Canadians to adapt or use in any way they see fit.

This is a discriminatory policy. People with disabilities and their families are not drains on the Canadian economy. We are people, and we should not be denied equal rights because of our disabilities.

My letter is below:
Continue reading Call to Action: Tell Parliament to Stop Discrimination against people with disabilities who immigrate to Canada

International Disabilities Alliance Disability Rights Bulletin May 2010

Global News

Spain first country to submit its initial report to the CRPD Committee

On May 3rd, 2010, Spain submitted its initial report, on the implementation of the Convention on the Rights of Persons with Disabilities, to the Committee on the Rights of Persons with Disabilities (the CRPD Committee). This means that Spain has become the first country to submit a report to the Committee on how the rights of persons with disabilities are being implemented. For the moment, the report is only available in Spanish. Please click the following links to have access to the report and its annex: Spanish report and Annex.

Elections for the CRPD Committee

The election of six Members of the CRPD Committee to replace those whose terms are due to expire on 31 December 2010, and to increase the membership of the Committee from twelve to eighteen persons as a result of the 80th ratification of the CRPD, will occur during the Third session of the Conference of the States Parties to the Convention. The Conference of States Parties will take place in New York from 1-3 September 2010.

On May 3, the Secretary-General of the UN sent a letter asking States Parties to nominate candidates to the Committee by July 1. The CRPD Committee has recently published a section in its website on these elections. For further information on the elections for the CRPD Committee, please click here.

IDA has prepared a number of documents explaining the process as well as a questionnaire to be filled in by candidates. Please click here to access these documents and to get more information on these elections.

IDA is including in its website, information on those nominations that have been decided at national level. To have access to the information on the candidates, please click here.

OHCHR

The OHCHR has recently published on its website on disability a new tool: “Monitoring the Convention on the Rights of Persons with Disabilities. Guidance for Human Rights Monitors.” Please click the following links to see this publication: pdf version of report or word version of report.

CRPD ratifications reach 86

The ratification of the CRPD by Nepal, on 7 May 2010, has increased to 86 the number of States Parties to the CRPD. Ratification by Nepal of the Optional Protocol (OP) increased to 53 the number of the States Parties to the OP. The number of signatures to the CRPD is 144, while the OP has 88 signatures.

Treaty Bodies

The CAT Committee, in its 44th session, considered from 26 April-14 May 2010 reports from Austria, Cameroon, France, Jordan, Liechtenstein, Switzerland, Syrian Arab Republic and Yemen. To have access to the disability analysis of the Concluding Observations adopted by the Committee during this session, please click here.

IDA prepared a number of documents (uploaded on the CAT Committee website) with suggested recommendations for the Concluding Observations, which were adopted by the Committee in this session. Some of these recommendations have influenced the Concluding Observations of the reviewed States such as Austria, to which the Committee recommended to cease immediately the use of net beds as it constitutes a violation of article 16 of the Convention.

Universal Periodic Review

The UPR Working Group has held its 8th session from 3-14 May 2010. In this session, the following countries were reviewed: Kyrgyzstan, Kiribati, Guinea, Lao People´s Democratic Republic, Spain, Lesotho, Kenya, Armenia, Guinea-Bissau, Sweden, Grenada, Turkey, Guyana, Kuwait, and Belarus. The review of Haiti was scheduled for this session but was postponed.

For an analysis of the refer ences to persons with disabili ties in the UPR Working Group reports, please click here.

Upcoming Meetings

The 54th session of the CRC Committee (25 May-11 June 2010) will consider reports from Argentina, Belgium, Grenada, Guatemala, Japan, Nigeria, The Former Yugoslav Republic of Macedonia, and Tunisia. OPSC: Argentina; Belgium; Colombia; The Former Yugoslav Republic of Macedonia; Japan and Serbia. OPAC: Argentina; Colombia; Japan; Serbia and The Former Yugoslav Republic of Macedonia.

Click here for the references to persons with disabilities in the States’ reports, lists of issues, and written replies.

Upcoming Session of the Human Rights Council

The 14th session of the Human Rights Council will take place from 31 May-18 June, 2010, in Geneva. Click here for further information on this session.

IDA has prepared a disability analysis of the following reports prepared for the 14th session of the Council.

Special Procedures

The following Special Procedures reports, which have been prepared for the 14th session of the Human Rights Council, include references to persons with disabilities: Independent Expert on cultural rights; Special Rapporteur on migrants; Special Rapporteur on education; Independent Expert on extreme poverty; Special Rapporteur on racism, and the Independent Expert on Haiti. For detailed information on the references to persons with disabilities in these reports, please click here.

UPR

All UPR Working Group reports, which were prepared at the 7th session of the UPR (February 8-19, 2010) and will be presented to the 14th session of the Council, include references to persons with disabilities. Click here for the disability analysis of these reports.

Other reports

IDA has undertaken an analysis of other reports that have also been prepared for the 14th session of the Human Rights Council. Click here to access this analysis.

About the IDA Disability Rights Bulletin

This bulletin is intended for experts advocating for the rights of persons with disabilities, in particular within the Geneva-based human rights framework. It is prepared by the IDA Secretariat, which also provides support to the Group of States Friends of the CRPD.

For more information about IDA, its CRPD Forum and its member organisations, please visit: www.internationaldisabilityalliance.org.

Contact us via email at: stromel@fundaciononce.es.