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Tag Archives | ableism

Lily Parra Needs a New Heart

Dr's prescription pad with "Heart Transplant" written on it - Lily ParraHere’s a familiar story. Four-month-old Lily Parra won’t be put on the transplant list for the heart she needs because of disability. Long-time readers may remember that I’ve written about two similar stories: Children’s Hospital of Philedelphia’s refusal (eventually reversed, after a long fight) to perform Amelia Rivera’s kidney transplant because of her intellectual disability, and the Hospital of the University of Pennsylvania’s refusal to put Paul Corby on the transplant list for a heart because of concerns stemming from him being autistic.

Stephanie Parra was 32 weeks pregnant when doctors informed her about Lily Parra’s heart defect and how it meant that she probably wouldn’t live long past birth. They suggested that Stephanie have an abortion, but she refused.  Lily Parra was born on December 8th, 2015 and went home a month later, after surgery to have 2 stents put in her heart. Her parents took her back to the hospital a week later because of concerns that she was having a seizure. Doctors quickly saw that she was in respiratory distress, and it was determined that she’d picked up a bacterial infection from being in the NICU that had settled in her lungs. After an echocardiogram also showed that Lily had mitral valve regurgitation in addition to her other heart problems, doctors determined that she needed to be put on the transplant list. Read more here about Lily Parra’s health problems

However, an MRI showed that Lily Parra had water on the brain, causing a condition called diffuse cerebral dysfunction that might result in developmental disability. Stephanie Parra says that she was told by doctors generally that “because of this diagnosis, her daughter would have a poor quality of life and therefore, they would not list her for a heart transplant” and by Dr. Shamel Abd-Allah specifically that “I don’t have a bag full of hearts that I can give to everybody and I’m not going to waste a heart on a kid who might have disabilities.

A letter from Loma Linda University Children’s Hospital posted on the online petition that Stephanie Parra has started states Lilly Parra isn’t being considered for a transplant because chromosomal abnormalities that will affect longevity. Stephanie says that she only heard about this when she heard doctors and nurses in the PICU discussing how Lily Parra was missing genetic material on chromosome 2p21. Individuals with this deletion are usually developmentally disabled.

I Get It

Donated organs are in short supply and tough decisions need to be made about how they’re allocated. Doctors should be reasonably assured that recipients are committed to caring for themselves and the organ that they’ve received – taking the anti-rejection medications, following up with doctors, and staying in good health to the greatest extent possible.

I get bringing up some disabilities as a consideration when evaluating people for transplant. If I needed a transplant, I would get it if doctors asked me questions like:

When you’re depressed –

  • Do you realize that you’re depressed?
  • How well do you take care of yourself?
  • Do you ever stop taking your medications?
  • Do you have a plan that you put in place to help you get back to baseline again?
  • How likely are you to put that plan in place by yourself? What kind of help do you need to get it going?
  • How long does it take you to get it going?

If I indicate that every couple of years I get so depressed that it’s hard for me to get out of bed and to work and my appointments, and that I stop taking all my medications, I imagine that this would be concern for a transplant team.

I think is fair is that disability be a concern in the transplant process.

However…

Disability shouldn’t dictate whether a person is excluded from transplant (especially very young children). Lily Parra may very well end up developmentally disabled. The reality is that we can’t know the extent of her disability at this point, and that, just as it would be fairly easy for me to put a plan in place with support from others that ensured I was taking my anti-rejection meds and seeing my doctors even when depressed, Lily Parra can have supports put in place around her as well, if needed, to ensure that she cares for herself as an organ recipient.

I worked with an intellectually disabled woman who never forgot to take her meds. She’d tell me, “I need to take my meds now.”

It’s not fair to decide when a baby is four months old that he or she will not be able to live with the demands of being an organ recipient, even if developmental disability is involved.

Lily Parra – Deeper Issues

Doctors want people who have the best chance of high “quality of life” to receive donated organs, but their conception of “quality of life” is often narrow and ableist. If doctors can’t imagine a recipient getting a typical education and ultimately contributing to society through paid work, family, community roles, etc., then they assume that donated organs would be better off with individuals who can do these things in the stereotypical ways that they envision.

This bias toward the stereotypical “normal life” (and emphasis on how potentially “functional” in society a person is as a criteria for being being an organ recipient), is highly ableist. It’s perfectly possible to have high quality of life while having significant disabilities, and almost certain that quality of life would be even higher without the physical and attitudinal barriers blocking disabled peoples’ full access to society. The view that disability is something that’s in the individual and needs to be cured is so prominent within the medical community that it’s actually called the medical model of disability, and its refusal to acknowledge that disability is a social creation (the social model of disability) doesn’t leave any room for the idea biology doesn’t predict destiny.

Again, especially when a potential organ recipient is very young, it’s terribly unfair to totally base a decision about whether or not someone gets organ on, “Disability always comes with low quality of life.” We should not be making decisions transplants based on whether we think a recipient could or couldn’t reach the quality of life that we’d consider acceptable because:

  1. What doctors consider a good quality of life may not be what the recipient considers a good quality of life.
  2. An individual generally should not be able to dictate what a good quality of life is for someone else.
  3. As much as I respect doctors and clinicians and their abilities, they are frequently wrong about what disabled people end up being able to do. My doctor at my first stroke rehab centre didn’t think that I’d ever really be able to move my left arm again. I have considerable movement in my left arm and am still getting return in my left hand after 15 years.

I Also Realize…

…that we don’t have the full story from Loma Linda University Children’s Hospital. Garrett Caldwell, Executive Director for Public Affairs at Loma Linda, wrote a letter in response to Special Olympics Chairman Timothy Shriver’s op-ed about Lily Parra in the Washington Post, but it was very general (as responses usually are). There are aspects of the story that don’t make sense – like why the Parras were not told about the 2p21 deletion, and why one doctor told them that Lily Parra was in kidney failure and another then said that she wasn’t. It’s totally understandable that parents under extreme stress might misunderstand information or might not remember something that was said to them. There may be other factors behind the decision to remove Lily Parra from the transplant list.

However, there’s enough consistency in Stephanie Parra’s story across media accounts to make me believe that it was said that Lily Parry would not receive the transplant because of a developmental disability or the potential for one, and this is not fair. It’s ableism that needs to be called out and that Loma Linda University Children’s Hospital needs to respond to.

I didn’t like most of Shriver’s op-ed, to be honest – I thought that he relied too much on emotion and not enough on fact to make his argument. But I do think he nailed it with this:

“This is an infuriatingly familiar story, and people with intellectual disabilities know it well. Too many medical professionals see them only in terms of “function” or “dysfunction.” The vast diversity of gifts and challenges that make up each of us are reduced to a binary conclusion. You’re either able or disabled, valuable or not. And when you’re not, you’re hopeless.”

Please sign Stephanie Parra’s petition to have the Transplant Board at Loma Linda University Children’s Hospital reconsider putting Lily Parra back on the transplant list.

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Zika and the Problem of Conflicting “Advocate Hats”

zika

Trigger Warning: Abortion, Ableism, Infant Illness

A friend sent me a link to an article on the weekend from a conservative blog: The UN Wants to Battle the Zika Virus By Killing More Babies. about how the UN’s response to the Zika crisis in Centre ald South America, in the face of encouragement by 5 of the countries in which Zika has emerged that women delay pregnancy by as much as two years. Since pregnancies tend to be unplanned in these countries, abortion legal only in certain circumstances (Colombia) or outright illegal (El Salvador) and birth control difficult to get, the UN’s recommendation is that if the governments really want women not to have babies, they need to rethink their stance on legal, accessible abortion, birth control, and sexual education.

My friend said,

“I suppose that you’re outraged by these ableist strategies?”

So I went off on a tare about my abortion beliefs, talking about how every woman should have access to sexual education, birth control, and abortion, and how if a woman chooses to have an abortion because the baby is disabled, it’s none of my business and not my place to judge. I also went on a bit about how if we want to talk about ableism and and abortion, maybe American pro-lifers could get as worked up about how it goes on in their own backyard every day and do something constructive to stop the circumstances that cause women to consider it instead of just talking about a reality that they don’t like. I finished with a bit of a rant about how if they were really concerned about the abortion of Zika-affected fetuses in Central and South America, they could either start adopting Zika-affected babies from the region so that they’re not aborted or they could start giving money toward research for a cure for Zika.

And he emailed back, “So I was wrong?”

And I emailed back,”It’s ableist as hell and it makes me sad.”

Because the link between Zika and microcephaly is still disputed. However, even with link that’s still not been proven solid, what’s strong enough to prompt the UN to finally recommend changes to women’s’ health policy that needed to be made anyway?

The fear of having a disabled child.

Zika and the Importance of Reproductive Options for Women

Of course, this conservative blog had a bit of pro-life spin to it. No one has suggested killing Zika-affected babies, but rather making reproductive options (not just abortion) more accessible in countries where Zika is an issue (same thing to many pro-life people, I realize, but there’s a distinction to me as a pro-choice person, and I’m not interested in arguing that here.) This was something that needed to be done anyway. All women should have access to reproductive information and options (my opinion).

And part of that, for me, is that it’s none of my business why a woman aborts her baby. So even if a woman’s reason is ableist as hell, there’s no reason that I should know (or want to know) unless she wanted me to. I do believe that abortion, even for ableist reasons, needs to be made and kept legal, available, accessible, for all women.

This is has been a tough place to get to. Some days it’s hard to stay there. It’s hard to sort out my feelings about abortion when I’m both an advocate for women’s reproductive rights and someone who intensely dislikes ableism. I think that some people can ask whether someone can have both orientations. Most days I think it’s possible. Some days it’s difficult.

Sometimes my mind my mind starts to fight with itself when I hear things like things from Paula Avila-Guillen of the US Centre for Reproductive Rights, speaking of Central and South America to The Guardian:

“In many rural areas men and women do not have easy access to contraceptives and many pregnancies, especially in teens, are the product of sexual violence and abuse,”

My fists clench as I  think about how people everywhere need good sexual education, and access to birth control and reproduction options should have the options, including abortion. And yes, it’s especially important for women living in countries where the medical community has seen enough of Zika to declare its belief that the virus  and microcephaly in infants are linked, where pregnancy can be difficult to avoid and where there are few if any no services for raising disabled children deserve to know, in light of these realities, about what Zika might do to a fetus. I’ve been to South America. I know that there are few if any government supports for disabled people and loved ones that care for them. I remember vividly seeing homeless people on the streets, legs paralyzed with no wheelchair, dragging themselves around as they begged for money.

But it should have happened long ago. The UN’s recommendation to these countries that governments become more open to the idea of improving reproductive rights for women should have come a long time ago, says the women’s rights advocate in me. That it’s come about because of the suspicion that Zika will cause disability in infants is ableism, pure and simple, says the disability advocate in me, who wishes that all lives and life experiences were valued equally and that all disabled people everywhere had the supports that they needed at all stages of

I believe that disabled babies deserve a chance too, which sounds like something the pro-life movement would like.

But I’m not pro-life, as much as I sound like it sometimes. And the UN has no monopoly on ableism.

Zika and Abortion Specifically

As of Feb 3, there have been 35 cases of Zika in the US, all of them caused by exposure to infected mosquitoes through travel. No pregnant women have been infected.  There’s also some evidence to support the idea that Zika may be sexually transmitted.

A Zika-infected baby born with microcephaly in North America would theoretically have a better chance at a fulfilling life in a country like the United States or Canada, where more services are available (not enough, but more) than one born in Central or South America.

But should a fetus be diagnosed with Zika in the US, how welcome would it be? I found these comments at the end of only 2 articles about Zika:

  • EXCUSE ME???? What is unethical – and in fact IMMORAL – is to knowingly bring a severely mentally and physically disabled child into a world of SEVEN BILLION PEOPLE where we are RUNNING OUT OF EVERYTHING. Good God. Why is this even a question?”
  • “My unborn deserved to live without stigma, stares, and the ability to be productive and not yelp and drool, and not be a 19 year old that had to have changed diapers, who could get married and have a family, pay ball, run……so I decided that termination was best for the both of us. I don’t regret that decision at all.”
  • “Why would any woman knowingly allow a severely deformed-disabled child to be born? Would SHE want to be born in that condition?”

I hate comments like those. And yet, as someone who believes in a woman’s right to have an abortion, I would not say to the woman in the second comment, “Well, your reasons for having an abortion were wrong.” That’s not my right.

And for the record, I do share the concerns that women have brought up about Zika-infected fetuses in the US especially: that lawmakers will try to force women will to carry to term against their will without adding services to assist with raising them, that they’ll become another way to shame women (“You shouldn’t have traveled to that area”, “you should have been more careful with birth control”, “you shouldn’t be having sex right now”), and that they’ll be used to in general to chip away at the right to legal abortion in areas where it’s particularly contentious.

I will always fight for a woman’s right to have an abortion, regardless of her reason.

That doesn’t mean that I can’t be sad about the reason, because ableism makes me sad and angry.

There’s conflict. But where isn’t there conflict, right?

More about this later, probably.

 

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Ellen Degeneres and “Idiotest”

Funny man in blue bow tie holding a plate with title 'idiot'So I was cleaning yesterday and had my television set to “Ellen”.

I don’t watch “Ellen” very often. It’s not that I don’t like Ellen Degeneres. I actually find her quite funny. There’s just usually something on that I want to watch more when her show’s airing in my area and I happen to be watching TV, and I don’t have a…DVR…?

But yesterday I was distracted by cleaning and the show that was on at 3pm switched over to “Ellen” and I didn’t bother to change it, so there you go. But the show, a repeat from April, got my attention very quickly when Ellen started talking about how they were going to play their own version of “Idiotest” (a game show of which I’d never heard, on the Game Show Network) with the audience.

“Idiotest”…Idiot…

I don’t like the word “idiot”. It’s got an ableist history as sordid as “retard”. I try not to use it since I learned about how ableist it is, but when I do let it slip, you can bet that I’m very angry. Eliminating it from my vocabulary was difficult, because it’s very much a part of society’s vernacular, and I’d grown up using it (unlike “retard”, which was never allowed in my house). And most people don’t know that it’s ableist, so I cut them some slack when I hear it.

However, the fact that there’s a game called “Idiotest” (on prime-time and on “Ellen”) makes me feel a uncomfortable, particularly when Ellen said in her video that she was playing the game with the audience to “assure the world that there are no idiots in my audience”.  Obviously the research department hadn’t unearthed that “idiot” was originally a derogatory term for intellectually challenged people. People aren’t using it with that intent now, obviously, but even if it wasn’t her intent to send the message that intellectually challenged people weren’t welcome in her audience (and I don’t think that was the message), there was a subtle, albeit joking, message that people with low intelligence aren’t.

Calling People Idiots Just Isn’t Funny

The problem is that the joke isn’t really funny, and it becomes less funny when you know the history of the word “idiot”. There’s currently enough in the definitions of “idiot” on the first page of Google that any good researcher should have thought, “Uh oh, better look at this before we create a game around it.”

Ellen’s idea of “Idiotest” involved bringing people (presumably pre-selected) up from the audience and asking them a brain-teaser. The people who got them wrong (4 of 5) got called idiots and were made to sit on the stage wearing dunce caps.  Here’s the video:

They each got a great trip as a prize, but that’s not really the point. The whole “Idiotest” business hearkens back to a particularly ugly time in the school system that really doesn’t need revisiting. Children were asked questions through which they perhaps legitimately couldn’t think because of undiagnosed cognitive difficulties and learning disorders, and when they couldn’t get the answers they were shamed in front of the whole class and made to sit in the corner wearing dunce caps.

Seeing someone try to make that experience into something fun and funny made me feel profoundly uncomfortable.

I expected a bit more sensitivity from Ellen Degeneres.

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Disabled Parking Permits and the Dangers of Assumptions

Disabled parking tag with note that says "Faker" attached to itThis post is going to be preaching to the choir for most of the people who read this blog. Maybe you can pass the link along to someone who insists on making assumptions about people who park a vehicle with the disabled parking permit visible in the window, in a disabled parking spot.

My thoughts on this are spurred by a post that I shared on the Facebook page, by a woman with who parked in a disabled parking spot, using the disabled parking permit that had been issued to her, and came back to find a note attached to it that said “FAKER”.

A Brief Lesson About Disabled Parking Permits

In case anyone’s unclear on this, let’s go through when you can’t park in a disabled parking spot (Ontario Regulations):

When you don’t have a disabled parking permit displayed, and you’re going to be in the store for “just 5 minutes”

When you do have a permit displayed, and you’re going to be in the store for any amount of time and the person to whom the disabled parking permit was issued is not in the car.

When you do have a disabled parking permit, you’re going to be in the store for any amount of time, the person to whom the disabled parking permit was issued *is* in the car, but won’t be going into the store. If the disabled person is just going to sit in the car in the disabled parking spot, they’re taking up the spot and pushing out a disabled person that might actually intend to go into the store. It’s a misuse of the permit.

Here’s when you can park in a disabled parking spot: You are the disabled person to whom the permit was issued, or the person to whom the permit was issued is in the vehicle, and will be going into the store.

The Disabled Parking Permit and Assumptions

Abuse of the disabled parking permit is definitely annoying. When I see a car parked in a disabled parking spot, I check to see if there’s a permit displayed on the dashboard. But what’s even more annoying is when people:

  1. Make the assumption that a person who doesn’t “look disabled” enough to have a disabled parking permit assume that a person isn’t entitled to it and must be scamming the system.
  2. Take it upon themselves to police people who they assume aren’t “disabled” enough to have a disabled parking permit.

I don’t think that the average person understands that for many, many disabled people, a day where they walk around town doing errands or having lunch and an afternoon out with friends means three or four days of recovery where they have to use a wheelchair. Even after a decade of being able to walk without a cane inside, and even outside for short distances depending on the season and weather, a day of walking without my cane at the Toronto Zoo left me so exhausted that I was stunned.

It’d be easy to assume, catching a disabled person after a few days of rest and recovery, that perhaps the disabled permit on the dashboard isn’t necessary. Someone might assume that the person gets around that easily all the time, and become suspicious: How is that person disabled? Did he or she scam the system? The trouble with that assumption is that it doesn’t take into account that perhaps that person is so exhausted and in so much pain that the parking permit is vital.

The other trouble with that assumption is the second one that often flows from it, that having identified disability parking permit “fraud”, it’s okay for citizens to deal with it themselves.

Disabled Parking Permit “Fraud”: Citizens Policing Citizens

I don’t understand is how it’s anyone’s business, outside of the office that issues the disabled parking permit, whether a person is “deserving” of a permit or not. The assumption that I’d rather make is that the permit is on the car, someone thought they should have it, whether it looks to me at the moment like they should or not –

And it’s not my job to police people!

It’s not Joe Public’s job, either. It’s none of his business. And I’d really like to know where people got the idea that it was. The idea that disabled people should be required to prove to just anyone on the street on  demand whether they’re “disabled enough” to receive a service is particularly insidious ableism, and a real measuring stick of how far we *haven’t* come. When your typical person on the street still feels entitled to that sort of power over disabled people, that’s a real concern.

I remember writing something like that before, so I went back over my posts for the past year. I found what I was looking for in a post about Kanye West. He refused to continue singing unless everyone was standing up at a concert, and when some people in wheelchairs didn’t stand up (because they couldn’t) he sent staff to make sure that they couldn’t. I wrote:

“There are very few people to whom I have to prove that I’m disabled. They are service providers that need proof of disability so that I can start/keep receiving some sort of service. I’m not crazy about this, but it’s part of life, it’s fairly infrequent, and I deal with it. I do not have to prove that I’m disabled to a person on the street, another disabled person, or anyone else that I don’t want to.”

You don’t have to either. Spread the word.

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Rand Paul Doesn’t Belong Anywhere Near the White House

Rand Paul with American flag to his right and Kentucky flag to his leftWell, Election 2016 is officially underway, with Ted Cruz and Rand Paul the first two to officially declare their candidacy.

(ETA: I see now that Hilary Clinton threw her hat in the ring yesterday and that Marco Rubio is supposed to today.)

For readers that have joined this blog since the last US Election, be warned: I talk about US Elections, even though I’m Canadian citizen. I talked about Election 2012 far too much. But I was genuinely curious about how it was going to shake out for disabled people in America. Most candidates dropped some general hints in their comments about their plans to bolster (or not bolster, as the case may be) the social security net, but few addressed the disability issue directly, or took the time to address a group large group of disabled people that invited the candidates to speak to them.

I already feel confident in making some predictions about Rand Paul based on past record.  He voted “No” on the ratification of the CRPD (as did Rubio, for what it’s worth) and several months ago made some off-the cuff but inaccurate comments about SSDI and fraud:

“What I tell people is, if you look like me and you hop out of your truck, you shouldn’t be getting a disability check. Over half of the people on disability are either anxious or their back hurts — join the club. Who doesn’t get a little anxious for work and their back hurts?  Everybody over 40 has a back pain. And I am not saying that there are not legitimately people who are disabled.  But the people who are the malingerers are the ones taking the money away from the people who are paraplegic, quadriplegic. You know, we all know people who are horrifically disabled and can’t work, but if you have able bodied people taking the money, then there is not enough money for the people who are truly disabled.”

After taking some time to actually learn some statistics about disability in America, Rand Paul discovered that people get disability checks for more types of disabilities than backaches and anxiety…that the people who have these disabilities don’t make up over half the people that collect disability checks, and that the fraud rate for SSDI is actually relatively low. He tried to walk the statement back, but obviously I remember it – chances are others do as well. Besides, his Libertarian “If you haven’t prepared then I shouldn’t have to help you” leanings aren’t going to make him very sympathetic to the needs of disabled people, I’d imagine, or to those of families who have disabled children that may require costly supports and services.

But I’m actually here today to comment on another story regarding Rand Paul. It’s not disability-related, so I ask for your indulgence as I meander a bit.

I came across a video on my Facebook timeline, entitled “Rand Paul Releases Sexist Condescension on Two Women Journalists”

“Interesting,” I thought, letting the video run.

I ended up watching it several times, because I couldn’t believe what I was seeing:

Rand Paul Needs to Learn to Play Nicely with the Ladies

Now, I acknowledge that NBC’s Savannah Guthrie took a bit of time getting to her actual question, but someone needs to explain to Rand Paul that even when he feels like a like a lady journalist has smacked his ego and left a boo-boo, mansplaining proper interviewing technique to her makes him come across like a little boy throwing a tantrum because a girl bested him at the spelling bee. He’s playing in the big leagues now, where other candidates smile and move on when a journalist’s line of questioning annoys them.

He’s going to have to suck it up.

*I* can be annoyed, though, and I was. I was annoyed on Savannah Guthrie’s behalf, that he spoke to her the way he did and that because of her position, she couldn’t really say anything back to him.  I think that she was annoyed, too.

And then I saw him “shush” the second reporter, CNBC’s Kelly Evans, and my eyes narrowed, and I moved from annoyed to downright angry.

My mother was not a woman who would be “shushed” and she didn’t raise my sister and I to be “shushed”. I like to think that I could have kept it polite in that reporter’s circumstances, but I can guarantee that I would have said, “Please don’t “shush” me.”

“Shushing” anyone is rude, and disrespectful, and not what I’d expect from a man who wants to be President. He’s quite rude over the course of this whole interview, in fact, especially towards the end:

He joked about this later to a male reporter who asked about vaccines: “You don’t want to be shushed, do you?”

But I don’t think that Rand Paul would “shush” a man. I think he sees men as colleagues and women as little girls, ultimately to be tolerated, but chastised when they misbehave.

Rand Paul Didn’t “Shush” Megyn Kelly

A bunch of people have called Rand Paul on this behaviour, including Fox’s Megyn Kelly. I have a love-hate relationship with Megyn. Sometimes she’s right on. Sometimes she’s ridiculous. A Jezebel reader caught it nicely, I think, when she said that Megyn Kelly is very good at speaking about issues that affect her – well-off, white, non-disabled (my addition) women. But on these issues she’s quite vocal and can be quite compelling, and her take-down of Rand Paul during an interview with him for how he treated Guthrie and Evans was fairly gutsy – gutsy enough that he didn’t try to speak over her, although you can see he wants to.

She held his feet to the fire, and I think she caught him off-guard. Who’d have guessed that female journalists won’t always defer to you, huh, Rand Paul?

But I was waiting for him to try and talk over her. I was watching him, seething, forgetting all the times that I’ve disagreed with Megyn Kelly, seeing her the way I see my sister, my friends, my colleagues, the women I’ve supported over the years, and thinking:

“Don’t you fucking dare shush her.”

I don’t want Rand Paul in the White House (not just for the reasons I’ve talked about, but this is getting long.) I’ll try not to write too much about Election 2016…but plan on hearing that again.

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Bishop Kevin Doran Knows that Down Syndrome isn’t “What God Intended”

Drawing of blue, twisting DNA strands with the words "Down Syndrome" in magenta where chromosomes would beI put this article up about Irish Catholic Bishop Kevin Doran on the Facebook page yesterday, and it’s getting a lot of attention – enough that I thought it deserved some more.

Kevin Doran is getting attention from the disability community because of remarks he made during an interview about Ireland’s upcoming referendum on gay marriage. There’s an interview with Kevin Doran, rather hard-hitting, at the bottom of the article, which is quite interesting if you get the time, because it really shows how muddled and not-completely-formed the theology of at least Kevin Doran’s school of Catholicism is on this issue.

(Full disclosure: I don’t pretend to know what Kevin Doran’s particular school is, as I don’t know a whole about the Catholic Church, but I do know my Bible and I do have at least a working knowledge of and grudging respect for theology.)

I’ve heard his sorts of arguments before, and they made me sigh. But let’s get to what really brings me here today.

Kevin Doran’s Thoughts on Disability

I don’t think that Kevin Doran saw himself as being offensive when he said, in response to the question of whether homosexuality was something God intended, that “That would be to suggest that if some people who are born with Down Syndrome or Spina Bifida, that that was what God intended either.”

But it was very offensive nonetheless. And extremely problematic, because Bishops have authority within the Catholic Church. People believe that what they say is right. If the Bishop says that people with Down Syndrome or Spina Bifida weren’t what God intended, there are going to be people are that take that seriously, and that attitude is going to inform their actions.

Disabled people aren’t fighting enough harmful rhetoric as it is (and in the UK in particular, where the government-generated and media-driven “scrounger” continues to fuel catastrophic cuts to benefits and services?)

I know a number of intellectually disabled people who attend church every Sunday, who take great comfort from it, and great pleasure from being part of a church community. They are welcomed as any non-disabled member would be. That a Bishop not only believes in his heart that disability and the diversity and opportunities for learning (for everyone) that come along with it are not what God intended, but would publicly state it and use it as justification to deprive another group of rights that others enjoy is despicable to me.

But then again, Kevin Doran did seem to be out to out to offend just about everyone that he could with this interview, including gay and lesbian parents, and women who have been raped that are considering abortion. Perhaps he thought he should fit disabled people in there somehow as well.

Won’t you join me as I roll my eyes?

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Ableist Attitudes About People Who Use Wheelchairs

ableist attitudeFor some reason, I’ve seen ableist attitudes about people who use wheelchairs come up a lot in my social media feeds recently, and this article about a robbery in the British town of Coventry brought them all together.

I guess The Mirror figured that the thieves in question resembled two characters from the British comedy sketch show “Little Britain”, one of which uses a wheelchair. I’ve heard of “Little Britain”, but I’ve never seen it, and I’m not familiar with any of the characters.

Whether the thieves in question actually intended to resemble “Little Britain” characters or not seems unclear from the article, but it’s not really important for the purposes of this piece anyway. The point that I want to make is that this article clearly shows two very problematic and ableist attitudes about people that use wheelchairs that, despite efforts to educate the public that they’re inaccurate, are still just far too commonly held.

Ableist Attitude #1: No One Who Uses a Wheelchair Can Stand

Obviously this particular writer for The Mirror wasn’t familiar with the uproar a few months ago when George Takei posted an ableist meme to his Facebook page, because I was far from the only blogger to write about the fact that a person that uses a wheelchair suddenly standing up is probably not:

  1. Experiencing a miraculous healing or
  2. Faking a disability.

Plenty of people who can stand and walk use wheelchairs. I was standing up from my wheelchair not even a couple of weeks into stroke rehabilitation. I walked short distances with my cane but used a wheelchair for long distances for about a year after I left stroke rehabilitation. The whole “Only paraplegics use wheelchairs and people who walk don’t use wheelchairs” is another one of those binary ways of viewing disability that ultimately holds disabled people back and keeps society from fully appreciating the ways that we can facilitate true inclusion.

Not to mention, it helps people to justify dangerous, deeply ableist attitudes. If your reaction to seeing someone in a wheelchair stand up is that they’re faking a disability, and you already share the general opinions of say, Rand Paul or Conservative politicians in England that there are are a whole bunch of people who receive disability benefits that don’t actually need them them…well, it doesn’t help our case when budget time comes around. And disabled people in Britain can’t afford to lose more than they already have to the “scrounger” narrative – the austerity measures that have come as a result of it have caused far too many deaths already.

Ableist Attitude #2: People Who Use Wheelchairs are “Wheelchair-Bound” or “Confined to a Wheelchair”

People who’ve looked at the Facebook page since Sunday saw something I posted that talked about this.

Wheelchairs don’t confine disabled people. They actually free those of us who use them. Like I said, I used a wheelchair for a year after my stroke when walking long distances was just too exhausting. In that year I was was still very unstable – much too unstable to go out in with my cane in the winter for even short walks unattended. I was pretty much housebound, except for the times that my father drove me places. But because I had my chair for long distances, I was able to go out of town every now and then and go shopping, go to a movie, have dinner in a restaurant…I was able to go to the Toronto Zoo with my family…I spent a great day touring Kingston (where I used to go university) with my sister and her friends…there were even plans to go to Canada’s Wonderland, a large theme park about two hours away. I never got to go, but my wheelchair would have made it possible for me to do so.

Wheelchairs make it possible for disabled people to work, volunteer, travel, play sports, dance, and do all manner of daredevil moves that I wouldn’t have dreamed of trying as as non-disabled person, let alone a wheelchair user. Here are some videos:

Wheelchair dancing

Wheelchair tennis

And this one…as Dave Hingsburger said about this video:

“Next time a reporter writes that someone is ‘confined to a wheelchair’ I want them to be duct taped to a chair and made to watch this. Maybe they will understand what ‘confined’ means when they are ‘confined’ and see the liberation that chairs offer.”

Editor of The Mirror, Meet Me at Camera Three

Let’s talk about wheelchairs and ableist attitudes: ‘Little Britain’ Thieves Hunted After Wheelchair-Bound Woman STANDS UP To Steal Food’

Really?

“…the apparently-disabled woman leaps up and steals packaged meat.”

Seriously?

“The charlatan stands up!”

I object to this both as a disability advocate and a writer.

The Mirror is a newspaper, and you should know better. If anything confines disabled people, it’s lack of accessibility and the attitudinal barriers perpetuated by articles like this one.

Your readers, disabled and non-disabled, deserve better.

 

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What is Senate Bill 334 Really About and Is It what the Disabled Community Needs?

senate bill 334It’s been awhile since I’ve talked about abortion on this blog.

Several people have covered this story recently much better than I will, but I really want to talk about Senate Bill 334, filed by Indiana Republican Senator Travis Holdman. Senate Bill 334 would make it illegal for medical providers to perform abortions based on disability or gender.

I realize that Senate Bill  334 sounds like a bill that, as a disability advocate, I should support. As I’ve said before, even though I’m pro-choice, I don’t like that it’s a reality that women get abortions because of a disability in a fetus, or the high risk of it acquiring a disability. It makes me feel sad. However, I do understand that there are reasons why it happens, ranging from pressure from the medical community to abort to parental concerns about being able to handle the needs of a disabled child, to general concerns from all involved about the child’s potential quality of life.

And, as Meriah Nicholls said in her essay “How to Save a Disabled Baby“, written last week, “Our country is not kind to people with disabilities”:

“What mother, not knowing about or having access to communities of proud, educated, successful people with disabilities, would want her child to be subjected to what most people with disabilities in the United States are?”

Yes, I understand why these abortions happen.

Although, quite frankly, who cares if I understand? The decision is not mine.

That’s what it ultimately boils down to for me. I don’t feel that I can say to women, “You have the right to choose, except in this one circumstance,” no matter how sad I feel about the reason she feels to end a pregnancy.

So I can’t support Senate Bill 334. I don’t even trust the motives behind Senate Bill 334, actually.

I Don’t Think Senate Bill 334 Is What It Seems

David Perry suggests in “Anti-Choice Activists Try to Drive Wedge Between Reproductive, Disability Rights Activists” that the strategy behind Senate Bill 334 is to “divide and conquer” disability activists and reproductive rights activists, and I think he’s right. That sort of strategy is insidious, and makes me even more determined to insist that women have the right to choose, period. Perry says:

“We fight back with accurate information and coalition building. We say: A woman’s right to choose is inviolate. Then we say: But before that choice, let’s make sure that it’s based on reality, not fear-mongering or misinformation.”

Perry is talking about the medical community and its tendency to give outdated and often inaccurate information to mothers who are a carrying a disabled fetus, and how Louisiana has legislated that abortion can’t be presented as an option in those cases (although it certainly is in other states).

He makes a vital point. Women need the correct information about a diagnosed disability in a fetus in order to make the best personal decision, as well as the correct information about potential options. Anything else is infantilizing, in that there’s an assumption that women won’t be able to make a good decision when people are honest with them and provide them with the best available information, and profoundly disrespectful to both women and to disabled people – after all, this will just be a disabled baby, why bother to give the mother accurate facts, or to even learn the accurate facts to give?

“Our country is not good to people with disabilities,” Meriah Nicholls writes. We need to pay attention to this, folks. If doctors are lying about us before we’re even born, or can’t be bothered to learn enough about us to ensure that they’re giving the people who will parent us the right facts, then there’s a big problem with how this country sees us.

Senate Bill 334 – Deja Vu All Over Again

I remember writing a similar post to this in 2013, when North Dakota tried to pass the same legislation. (I thought it had passed; thank God it didn’t). If the government really wanted women to stop aborting disabled fetuses, it would make it easier for parents to raise disabled children. From that 2013 blog post:

“I submit that the lawmakers that put this new abortion law in North Dakota together that if they  were truly concerned about lowering the number of fetuses that are disabled or that may become disabled because of a congenital condition, they’d concentrate on making these social reforms rather than making an abortion law about fetuses with disabilities:

1. Make adequate funding for respite, personal development, special diet and equipment, early intervention programs, and a case coordination worker available to families of disabled children from the toddler years until adult services kick in.

2. Recognize that because of expenses associated with raising a disabled child, a family that might be “well off” otherwise may need to rely on safety net services such as food stamps and Medicare.

3. Develop ways for parents and caregivers to connect and support each other, to further their education about caregiving issues, and to quickly access appropriate supports in a crisis.

4. Ensure that schools are properly following the IPRC process for disabled students, including the piece about transition planning for when a student moves from elementary to junior high, junior high to high school, and high school to post-secondary school or the job market.

5. Explore options for community-based residential placements (and not just group homes). Give disabled people a fighting chance to be community members. Develop ways to monitor the safety of of these placements on a regular basis and to provide a timely and thorough response to reports of violations.

6. Work to identify and eliminate ablism within government systems and start discussing how government can help the private sector with the same process.

7. Start acknowledging that the unemployment rate for disabled people in the US is much higher than for non-disabled people, and plan how to address it.

If I saw even one of those those things moved up on the priority list along with this new abortion law in North Dakota, I might believe that this is really about protecting the lives of disabled people.”

I simply don’t trust that GOP-sponsored abortion legislation regarding disabled fetuses is really about saving the lives of disabled children. For a party that keeps talking about how it wants  less government intervention in peoples’ lives and objects so vehemently to the government being involved in health care, this doesn’t seem a logical way for it to ensure that as many disabled fetuses as possible as carried to term – but for a party that has consistently displayed a vested interest in eroding a woman’s right to choose wherever it can, it makes perfect sense.

And it makes me frightened for my friends in America.

Oh, if you look at Senate Bill 334, you’ll see that it’s also trying to stop abortions being performed on the basis of gender. This is a concern too, of course – except that I’d rather find out how many of these actually happen in America before commenting on it.  Recent data indicate that 75% of mothers who receive a prenatal diagnosis of Down Syndrome terminate the pregnancy – obviously that sort of thing isn’t happening on the gender front in America. In fact, Perry suggests that the sex-selection portion of Senate Bill 334 is a “smokescreen“.

I don’t like any of this.

What do you think?

 

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