Autistic People, Accommodation, and Double Standands

I had an interesting online conversation about autism with a couple of women the other day. Let’s call them Jane, Sally, and Betty, forautistic simplicity. It all started with Sally talking about her  belief that autistic people need to do dominate the discourse on autism as they’re the experts on their own experience (I do agree, by the way. Who better to talk to about the experience of being autistic, and the needs and desires of autistic people, than autistic people themselves?)  Jane agreed as well, but voiced a concern that some autistic people need to made aware of how they present to others to be sure they’re not coming across as “snappy”.

And we were off and running.

Oh, Online Arguments…

Online isn’t the ideal place in which to have a discussion like this, especially with  four people involved. It was difficult to track who was talking to whom (and responding to what). Points and questions get lost. And, as in any medium where you can’t see anyone’s face or hear their voice, online words get taken in ways in which they weren’t intended.

Not that I’m exactly sure anything was misinterpreted here (especially after seeing a more contentious continuation of the conversation the next night). Jane definitely didn’t come across well, but I don’t think that she intended, at least during the conversation in which I was heavily involved to sound insensitive. I think that she was perhaps only very minimally (at best) familiar with the autism acceptance movement, and with the idea of privileged groups in general. But, despite all my years working with disabled people and a not insubstantial amount of training, I wasn’t aware of the autism acceptance movement. And privileged groups? I may have understood intuitively, to an extent, but I couldn’t have explained it and I wouldn’t have used those words. I certainly wouldn’t have explained “privilege” anywhere near as brilliantly as Lydia Brown does here: http://www.autistichoya.com/2013/02/ableism-tone-police-and-hypocrisy.html

Lydia acknowledges in that post that most autistic people  “frequently do have communication and language impairments”.  I’ve been doing a lot of thinking in the past few days about autism as a disability, and accommodation, and double-standards.

“I Know Better Than You What’s Good for You”

Later that evening, I participated in my first “Tweetchat”, hosted by Sally, about why autistic people feel the need to be acknowledged as experts about autism. I understand this. When you live with a disability day in, day out, it’s difficult to accept that society doesn’t consider you as much of an expert on it as a person who’s done (granted, a great deal) of reading and research on the subject and has some letters after their name as a result. Especially since the the general orientation toward autism still seems to be that it’s something to be cured, and that people with autism should be provided with supports that help them to become “less autistic”. There’s an assumption that autistic people *want* to reduce the behaviours associated with autism, so that they’ll fit better into society (increasingly not the case).

In the earlier online conversation, Jane, who works with autistic people (she didn’t say in what capacity) went as far to make the following arguments in favour of autistic people adapting the communication style to whatever extent they could to a tone that society found pleasing and reasonable, for the following reasons:

  • It’s good for them to try to adapt
  • People l like it when tone matches words
  • Since they’re the minority, they should be trying to adapt to the majority
  • I also read (whether it was corrrectly or incorrectly) an implication that if autistics are to expect any accommodation for communication difficulties (and that they really shouldn’t) they really need to be first be sure that they are trying as hard as they can to adapt their communication style to appear “less autistic”.

The Problem for Autistic People

The problem here is that society has has taken it upon itself to make a bunch of arbitrary rules for how autistic people *should* communicate (not necessarily the same “rules” that Jane laid out, but you’ll find a bunch more in Lydia’a discussion on “tone-policing), and absolved itself of any responsibility to provide accommodation for what is a very real communication disability. Some will be able to adapt to a certain extent, some simply won’t be able to. Some won’t want to, because they don’t see autism as something that needs to be “cured”.

When I consider tone-policing and the pressure on autistics to appear “less autistic”, and how they fit into my understanding of what disabled people should be able to expect, in terms of accommodations for disability, I’m confused and saddened.

I’ve never had said to me, as a disabled person, by non-disabled-people:

  • “It’s good for you to try to adapt; why don’t you try picking up that pen with your right hand/walking to the store without your cane?”
  • (I can’t think of an example for “tone matches words” that I can apply to my disability. This was a very specific response to a point about how people should respond to content in a conversation with an autistic person, as opposed to how it’s delivered)
  • “You should be trying to use both your hands and walk without your cane because stroke survivors are a minority in society and minorities should try to be like the majority.
  • “You shouldn’t expect elevators or cleared outside stairs in winter unless you’re doing every that you can to get better.”

I can’t think of anyone that I know that wouldn’t agree with me that I shouldn’t be denied use of an elevator based on how much work I’ve into recovery (or on how much I’m currently putting into it). Or that I should be trying to do things that are difficult for me, given my disability, simply because most people aren’t disabled, or because someone else thinks it would be “good for me” to try (with the exception of  that person of some medical professionals on my treatment team who urged to try things to see if I could do them, to strengthen muscles, to reinforce neural pathways, etc.). People simply don’t do the equivalent of “tone-policing” with me, and it would infuriate me (and a number of other people in my life) if they tried.

Why is it okay to do it to autistic people?

I don’t know what level of accommodation and protection from discrimination autistic people can expect under the Americans with Disability Act. If it is indeed the same level that I can expect, it doesn’t seem to me that society in general knows it. That’s not right.

And if autistic people aren’t getting adequate protection under the ADA, that’s not right either.

I need to end this here and hope it makes sense…I’ve been trying to get my thoughts together on this all week. Not being autistic myself, I may be off-mark with some of it, and people should please correct me if I’m wrong…these are just my impressions.

I’ll probably revisit this topic as I try to sort it all out…it’s really got me thinking.

 

 

Oscar Pistorius: First, a Human Being

Sitting here with CNN’s morning show on yesterday, waiting to hear whether disabled Olympian and Paralympian Oscar Pistorius was going to get bail (he did), I decided that it was time to write a blog post about him.

Unless you’ve been living under a rock for the last little while (or on a deserted island, which definitely seems inviting for me some days), Oscar Pistorius has been charged with the premeditated murder of model Reeva Steenkemp, his girlfriend. It’s all given new meaning to the phrase “media circus”, and I’ve heard about most of the major developments as they happen this week (over and over) because, with the time difference, the bail hearing has been happening all week as I’ve been getting up.

For Those Who Don’t Know Oscar Pistorius

(I didn’t, before I started writing this blog.)

Oscar Pistorius is a South African sprint runner with two below-knee amputations.  In 2012 Oscar Pistorius was the first athlete to compete in both the Olympics and the Paralympics. Oscar Pistorius is the runner pictured in the meme below, which some disability advocates consider “inspiration porn”. I’ve definitely heard the word “inspirational” a lot this week, and the word “hero” as well. Many disabled and non-disabled people consider him a role model and proof that you can do anything you want to if you work hard enough (read why this sort of thing makes me uncomfortable here: https://www.girlwiththecane.com/musings-about-inspiration-porn/ )

Oscar Pistorius

Oscar Pistorius had been dating South African model Reeva Steenkemp since November 2012. She was found shot to death through a bathroom door in his home on February 13, 2013. Pistorius says that he didn’t know it was her in the bathroom, and thought that she was an intruder.

A Long Way for Oscar Pistorius to Fall

I think that it’s always a shock for people when someone that they really admire or that inspires them is charged with something like this. We tend to put our heroes on a pedestal and assume that they’re not capable of terrible acts, and it’s hard for us when they prove us wrong.

But I think that there’s an extra layer to it when a disabled person disappoints us with their actions. I saw this a lot when I worked with intellectually disabled people, but I’d never really thought about whether I’d see the same phenomenon in physically disabled people. However, seeing all the tweets about how Pistorius could not have possibly done this, about how it all had to be an accident, a mistake…it’s made me start to wonder.

Pistorus’ disability seem to put him on a much higher pedestal than non-disabled celebrities from which to fall.

When Disabled People “Fall” Every Day

I once worked with a family that was shocked by a letter from their intellectually disabled son’s school. The school wanted to talk to them about how he was bullying another student, and then lying to teachers about it.

“I can’t imagine him bullying anyone,” his mother said. She really did look broken-hearted. “And I really didn’t think that it would even occur to him to lie,”

I stayed silent, really not knowing what to say. I didn’t know how to tell them that I knew that their son lied to them about things that had happened at school. I didn’t want to tell them that I’d seen their son bully other students and take great glee in it.

There seems to be an expectation in society that disabled people are all naturally and authentically nice, noble, honest, caring, fun-loving, and incapable of behaviour that hurts others.

Some are. Some are lovely to be around. Just as there are lovely non-disabled people with all these qualities who lovely to be around. I try to be nice to be around. Like the lovely non-disabled people, I sometimes have days where I’m not.

And just as there are non-disabled people who aren’t nice to be around, some disabled people aren’t nice to be around *at all*. They’re grumpy, they lie, they’re manipulative, they pick fights, and they bully others.

Sometimes it’s legitimately part of their disability, and very difficult for them to control. Sometimes it’s not. A family came to me one time and told me that their 16-year-old intellectually disabled teen was being very irritable and disrespectful, and not doing what they told her to.

“We’ll try and get a behavioural consult, to cover our bases,” I said. “But that might not be her disability…that might just be her being a teenager!”

Oscar Pistorius: The Point

Maybe Oscar Pistorius is as great a guy as his supporters want to believe. Maybe he’s just a stand-up guy, and his story that he didn’t know it was Reeva Steenkemp in the bathroom is absolutely true, and part of the tragedy of this story is that a young man is, for the rest of his life, going to have to live with the fact that he shot the woman he loved.

Or maybe he’s a cold-blooded murderer.

For better or for worse, his physical disabilities have nothing to do with which it is. Because, above all things, he’s a human being. Like all of us, he’s capable of brilliant things, and also capable of horrible things.

The more we can keep this in mind as we listen to coverage of his upcoming trial, the more we’ll be able to keep in all in proper perspective.

Twitter reaction to Reeva Steenkemp’s death: http://www.globaltvbc.com/oscar+pistorius+reaction+on+twitter/6442809019/story.html

Sexual Assault Travesty at Martin de Porres Academy

I’ve been in and around the social services field for a long time, given how old I am. I don’t shock easily anymore. But  the story fifteen-year-old K.J., an intellectually disabled high Manhattan teenager, and her sexual assault at Martin de Porres Academy, shocked me. Martin De Porres Academy

Martin de Porres Academy is a school in Elmont, New York for juvenile offenders and students with special needs. According to her family attorney K.J. was sexually assaulted by three Grade 9 males in her science class last May. The assault lasted approximately ten minutes and took place under a desk. The males others forced her to perform oral sex and tried to sodomize her, while another male student danced on the desk  http://www.nydailynews.com/new-york/girl-15-gang-raped-class-suit-article-1.1238721. She was hit on the head repeatedly when she tried to escape.

There are several things that make this horrific crime even worse:

  • There was a teacher in the room.
  • When she reported this to the school, they didn’t report it to the police.
  • Martin de Porres Academy eventually asked the police that the investigation that the family opened be closed and that they be allowed to handle the incident with “training and additional counseling”. The family wasn’t told for several months about this for several months
  • The Nassau County District Attorney was apparently aware of the investigation as it was going on, but did nothing
  • The investigation *was* dropped and the boys went unpunished

How did this all happen? Prepare to be even more disgusted.

Consent Issues

K.J.’s IQ is below 50, which in New York  is legally considered too low to consent to sexual activity. Other states have similar laws, and I’m in favour of them for people with IQ levels below a certain point. It’s a safeguard against abuse from caregivers. However, an even more fundamental consent law didn’t protect K.J., giving this case, as Judy Molland points out at http://www.care2.com/causes/rape-is-rape-unless-you-have-a-low-iq.html, a distinctly misogynistic feel.

K.J. told police that she told the boys “No” and “Stop”. And anyone that feels that an IQ below 50 is too low *not* to express consent to something in which one finds physical and/or emotional displeasure or pain hasn’t done much work with the demographic, because even non-verbal folks can express it with no question as to what the individual means.

There were 13 people enrolled in that science class at Martin de Porres Academy, and they can’t have all been absent that day. Even if the Martin de Porres Academy teacher wasn’t paying attention, there must have been other students witnessing this.  If K.J. said, “No” and “”Stop”, someone else must have heard it. And “No” means “No”. I don’t care if your IQ is 50 or 150.

However, the police apparently weren’t interested in investigating whether someone else heard her say “No”, because the boys that assaulted her all had IQs below 50 as well. This made the sexual activity consensual in their eyes.

Police: “It was not something you could arrest someone for”

Kudos to K.J.’s family for filing a lawsuit against Martin de Porres Academy in the Manhattan Supreme Court. The teacher who was in the classroom was fired but that’s not good enough.

And good for family attorney Madeleine Lee Bryer for calling bullshit on the police department’s stance that this wasn’t something in which they should be involved. As she points out, one of the boys knew right from wrong to the extent that he was found culpable for robbery. That creates enough reasonable doubt to investigate to what extent they all recognized the inherent wrongness in what they did that day and how it affected their actions.

Even if their disabilities prevented them from understanding that what they did in that Martin de Porres Academy classroom was wrong, there’s still no excuse for it. They don’t get a free pass. Yes, the justice system has to handle that level of disability and that level of understanding a bit differently than someone with a full understanding of those kind of actions and their effects. But the crime still needs to be investigated fully and and dealt with in an appropriate manner.

All parties in this terrible story are entitled, as citizens, to that.  But none of them got it.

Martin de Porres Academy, the Legal System…Lots of Blame to Go Around

Why?  I believe it’s because no one wanted to do a difficult investigation and do all the paperwork, ultimately. And because these teens are young, disabled (and, in at least one boy’s case, a criminal), it was easy to get away with just sweeping all of this under the rug.

But there are four young futures on the line here (not that I’m trying to overly empathize with the boys, please don’t misunderstand me…but they’re still young teenagers. They did a *horrible* thing, but they still have futures), And the lack of regard by multiple systems for these kids, especially for K.J. right after her assault, makes me sick. Sick.

Well done, New York State. Between your group home scandals, your accessible taxi dramas, and now this…travesty at Martin de Porres Academy, you’ve thoroughly disgusted me.

More information: http://www.nydailynews.com/new-york/shrt-article-1.1262564

State of the Union Address: Disabled People Absent Yet Again

I watched Obama’s State of the Union address on Tuesday night, which will be no big news to regular readers who know that I generally watch the State
state of the union
of the Union addresses. I thought it was a little long, and definitely more political than Obama’s past State of the Union addresses. However,  I was surprised (pleasantly) by most of it. I don’t know that he’ll be able to do everything that he plans (and I do like the plans that he’s laid out, particularly raising minimum wage) without either raising taxes or increasing the deficit, and I don’t think that the GOP is going to let him to do either of those.

It will be interesting to see how this all pans out.

As much as I like what Obama said in his State of the Union address, I was also interested by what he didn’t say.

State of the Union Address – What I Didn’t Hear

I didn’t hear anything about disabled people. Not new, but as disappointing as ever, considering that 57 000 000 people in the United States are disabled. Issues that affect the middle class (ostensibly the State of the Union address’s primary focus, although I thought that it wandered a bit) definitely affect the disabled:

  • Employment – The unemployment rate for disabled people has consistently been almost twice that for non-disabled people since long before the election, with nothing from Obama or Romney on a plan to address it. How will the manufacturing and technology jobs being created in or brought back into the United States fit into a plan to get disabled people back to work as well as non-disabled people? Obama’s thought about incentives to employers who are willing to give people who have been out of the workforce a long time a chance – what about incentives to employers who demonstrate a commitment to making their businesses accessible and their hiring policies such that qualified disabled candidates have the same chance of being hired as non-disabled candidates? 
  • Pre-school Education – Obama outlined a plan in his State of the Union address to “make high-quality preschool available to every child in America.” My question is, is every child truly going to get this running start at academic success? Will all preschools be required to be fully accessible, then? Will they have support staff, or capacity to bring in support staff, for children with physical needs that need assistance with activities with daily living throughout the day? Will trained staff be available to make sure that children with a variety of developmental and learning needs get the high-quality preschool for which their non-disabled peers are eligible?
  • Secondary Education – The assumption that intellectually disabled students, severely learning disabled students, and autistic students can’t go on to some sort of post-secondary education is far too widespread. The new curriculum that Obama proposes needs to adaptable enough so that students with a wide range of capabilities can complete it, and cuts to education can’t decimate support staff in schools to the point where disabled students can’t get what they need to succeed. Schools also need to redefine “college material” to take care that their criteria for who they will and won’t explore post-secondary options doesn’t become exclusionary. More attention to transition planning during the IEP process may be required, as well as and enlisting assistance from outside agencies to be sure that it’s implemented. Again, disabled students are just as entitled to a chance to benefit from Obama’s changes to accessing post-secondary education and to benefit from it when possible as non-disabled students are (See this article. “Redefining College Material”, for a perspective on this…http://specialchildren.about.com/b/2013/01/29/redefining-college-material.htm).
  • Health Care – Obama talked a lot about Medicare, the Affordable Health Care Act and seniors in the State of the Union address, but said nothing about disabled people and their families.  I gather, from what I’ve read, that the States are in charge of supports of this nature. However, many people end up paying for health care supports, therapeutic supports, respite services (not to mention supportive equipment, adapted vehicles and renovations to make housing accessible). Insurance covers some of it, but not without a battle. For a family with even two people working full-time on minimum wage, raising a child from birth to 18 with even moderate disabilities could mean incurring a large amount of debt. For the record, the United States has no monopoly on this – Canada is not meeting the needs of families supporting disabled people well either.
  • Voting Rights – It’s wonderful that 103-year-old Carrie Williams felt strongly enough about voting last November that she waited in line six hours to do it. And wonderful that at 103 years old she was hardy enough to do so! But there are many, many disabled people out there that simply would not have been able to wait that long, so good for Obama for addressing this issue in his State of the Union address. However, any election makes me wonder who has been helping intellectually disabled people to understand what’s going on. Do they know that they can vote? Do they understand what’s at stake? Who is doing this work with them? This is much more difficult work to coordinate, but just as important as any other voting issue. See what I wrote about this during Ontario’s last provincial’s election: https://www.girlwiththecane.com/election-day-ontario/.  Also (and someone else will have to tell me this, since I don’t know), what’s the accessibility situation at American polling stations? Is this something that needs improvement?

I liked Obama’s State of the Union address, overall. It appealed to the idealistic part of me. But the pragmatic part of me says, even realizing that he can’t get into all the specific details of these plans in State of the Union address, is screaming, “If you’re not even going to mention a group comprised of fifty seven million people in forty-five minutes, why should I trust that there’s any room in your plans for them?”

Disabled people deserve a shot at the American Dream too. They are American citizens too.

President Obama, I told you that I would be watching. Please don’t let me down.

Full transcript of the State of the Union address: http://www.c-span.org/uploadedFiles/Content/Documents/State-of-the-Union-2013.pdf 

Why Dave Hingsburger Doesn’t Do “Sex Education” for Disabled People

World-famous disability advocate Dave Hingsburger has been working with and advocating for intellectually disabled people for over thirty years. We read his books in my training to become a developmental services worker. He’s highly respected in the field, and it’s long been one of my goals to attend at least one of his workshops.

Content Note: Sex, sex education, relationship norms, sexual assault/abuse, sexual safety

"SEX ED" written on a chalkboard with a heart drawn around the words. Keyword: Dave Hingsburger

Image Description: “SEX ED” written on a chalk board with a heart drawn around the words.

***

Dave Hingsburger has a great deal of experience with speaking to intellectually disabled people about sexuality. I’m so glad for this…regular readers will know how important I believe it is that intellectually disabled people get the chance to ask questions about sexuality and accurate information in response. When I first wrote this blog, I’d found a video explaining why he prefers to do what he calls “relationship training” rather than sex education with the people he supports, and I put it up because I wanted to talk about that approach.

Unfortunately, the full video is no longer available on YouTube…you can get a taste of it from the preview I’ve posted here, and hopefully my reflections on the full video will still make *some* sense!

Dave Hingsburger on “Sex Education”

 

 

Dave Hingsburger is correct (as I’d expect him to be!): The term “sex education” does make parents, Boards (not to mention many teachers) nervous when it comes to intellectually disabled people. And yes, the only times I’ve really had to have a discussion about the mechanics of sex explicitly are when an issue has already come up (some sort of assault or abuse has happened, sexual safety within a relationship is a concern, someone’s level of understanding about sex needs to be determined).

The rest of it, as Dave Hingsburger talks about, has been the sort of questions that you’d expect from people that have modeled to them that it’s the norm to be in a relationship, to want to be a relationship…but that don’t always have the skills required to negotiate relationships (which is a great deal of us, disabled and non-disabled).

I’m not crazy about the term “relationship training”…”training” leaves me cold…but I do like the concept, for a couple of reasons:

  • It gets around that  knee-jerk negative reaction that people have to sex education for intellectually disabled people. 
  • It reinforces to intellectually disabled people and to the people involved with them that it’s healthy and natural for intellectually disabled people to want to be in relationships. It’s their right, and an appropriate area in which to offer guidance should it be desired.
  • It normalizes a healthy need for education for *everybody* in this area. I can think of at least five non-disabled people off the top of my head who would likely take “relationship training” if they felt that it would increase their chances of finding a long-term partner. Hell, I’d benefit from it myself. It’s not just intellectually disabled people who, for a variety of reasons and sometimes through no fault of their own, need to learn or improve upon relationship skills. In fact, I’d go as far to say that we all struggle at times with knowing and or/doing what it takes to be in a relationship – this isn’t a “disability thing”.
  • As Dave Hingsburger points out, it de-emphasizes sex. Sex is (usually) a part of a romantic relationship, but not all of it.
  • Lots of platonic relationships require negotiating as well, and some of the interpersonal skills that “relationship training” would teach are transferable to platonic relationships.
  • In both individual and groups contexts, it could address confusion about sexual orientation and different kinds of loving relationships in society.

For staff and families, supporting intellectually disabled people as they learn relationship lessons can be a full-time job in itself – Linda Atwell does great writing about this on her blog. We should make use of all the effective tools available. I like the idea of “relationship training” as a tool.

Now, if we could just do something about the name…

Thanks, Dave Hingsburger, for (as always), giving me plenty to think about.

Check out Dave Hingsburger’s blog.

 

I’ve Been Given a Liebster Award!

Thank you so much to my friend Linda Atwell over at http://outoneear.com (another one of my favourite blogs) for giving me a Liebster Award! I’m liebster awardhonoured, Linda.

It’s my understanding that “liebster” is German for “favourite”. The Liebster Award is awarded by bloggers to other up-and-coming bloggers whose blogs have less than 200 followers.

The official rules for the Liebster Awards are as follows:

  1. You must thank the person who gave you this award
  2. You must display the Liebster heart on your blog
  3. You should nominate 3 to 5 up-and-coming blogs with less than 200 subscribers
  4. Each person must post 11 random things about themselves
  5. Answer the questions given to you by the blogger who nominated you
  6. Create 11 questions for those you nominate to answer
  7. Notify your nominees and provide a link back to your post.
  8. You’re not supposed to do “ping-backs”

So…here we go.

Here are 11 random things that you might not know about me:

  1. I was 12.5 lbs when I was born (biggest baby ever to be born in my hospital at the time, although I’m not sure I still hold that record)
  2. I’ve seen “Star Wars” so many times that I could probably recite it if I had to
  3. I read very, very quickly
  4. Jon Stewart is my celebrity crush
  5. Processed cheese slices make me ill
  6. I’ve been to the Arctic Circle
  7. I can fall asleep just about anywhere
  8. I don’t own a cell phone
  9. I hate, hate, hate doing dishes.
  10. I used to be able to walk around on the tips of my toes without the special ballet shoes (not for many years, though)
  11. I’ve seen every episode of “Seinfeld”

Here are Linda’s 11 questions for me:

  1. What is your favorite travel destination and why? Ecuador. I didn’t think I was going to like it all when we visited my sister and her husband there, but it’s such a beautiful country…I’d go back in a heartbeat.
  2. Do you own any pets? If so, what kinds? I own 2 cats – Faira is eleven years old, and Mindee is 6 years old.
  3. Rain, sunshine, snow, or cloudy? Sunshine, definitely…although there’s something nice about snow right at Christmas (if only it would go away right after!)
  4. The mountains or the beach? If I couldn’t be in a place where there’s fairly easy access to both (like the West Coast), I’d choose the beach.
  5. How do you motivate yourself to exercise? I keep telling myself that it will help keep my weight down…lol.
  6. Did you make a New Year’s resolution? Share if you like. I don’t make resolutions, but I do think about directions in which I’d like to go for the year. I’m trying to focus on improving my health this year.
  7. Who is your bestest (yes, bestest is a word in my world) Valentine? My niece.
  8. What was your favorite all-time Valentine gift? Roses and a homemade dinner.
  9. How far in advance do you plan a vacation? Two or three months
  10. What is your dream car? Don’t really have one…but I did get to drive a BMW once, and it was pretty nice.
  11. If you could move to any other city in the world, where would it be? It’s a toss-up between London and New York. I love them both.

Here are the bloggers to whom I’d like to give a Liebster! (This was a tough decision…)

  1. http://abledis.com/
  2. http://brainlesionandme.wordpress.com/
  3. http://mycerebellarstrokerecovery.com/
  4. http://doorbellqueen.com/
  5. http://imreallygoingthere.blogspot.ca/
  6. http://www.myhappystroke.com/

Please visit their blogs! I’ve learned a tremendous amount from all of them.

My questions for the bloggers that I chose:

  1. Why did you decide to start blogging?
  2. Are you a morning person or a night owl?
  3. If you could only eat one food for the rest of your life, what would it be?
  4. What’s your all-time favourite movie?
  5. What was your first concert?
  6. Have you ever spent all day in your pajamas (as an adult)?
  7. What was your first pet’s name? Where did that name come from?
  8. What’s your favourite board game?
  9. Do you know how to ballroom dance?
  10. Can you play an instrument? If so, which one?
  11. What’s your dream job?

 

Pastor Ken Swanson, The Birth Control Debate, and Why I’m Seeing Red

It’s been a while since I did a post on intellectual disability and women’s health issues (specifically, women’s sexual health). I haven’t been deliberately avoiding the subject …Lord knows that sexual health issues in general raise concerns unique to people with intellectual disabilities, particularly around sexual safety, consent, and abuse, about which there needs to be discussion. But it’s birth control that’s on my mind today, due to an article that I read yesterday about radio host Pastor Ken Swanson that had me seeing red. Perhaps you saw it as well.

Difficult Conversations

I clearly remember the first time I ever had the “the talk” with a teenager. Not with my child (I’m not a mother). Not with a child in my family (my one niece is only 18 months old). It was with a teen with an intellectual disability who wanted to know about having sex with her boyfriend. Since then, I’ve talked with many people with intellectual disabilities, both teens and adults, about sex, birth control and why it’s important, what rape is and whether or not it happened to them, sexual abuse and what they need to do if it happens to them, pregnancy and how you know if you’re pregnant, and what to do when your partner wants to have sex and you don’t.

Thank God that there are more resources available now to help agency staff like me give accurate information about these things than there were when I was a teenager – public health nurses, sexual health centres, crisis centres when that has been necessary. I made good use of these resources. I wanted to be sure that the people I supported were getting accurate information.

Many of the people that I supported to had heard a lot of myths and been given a lot of misinformation. Not a huge surprise. I think that we picked up some erroneous information along the way.

But there’s erroneous information, and then there’s outright lies to support an agenda. I call bullshit on that. Pastor Ken Swanson, I’m talking to you.

Pastor Ken Swanson’s Stance on Birth Control

“The surgery” presumably refers to a hysterectomy.

Swanson is a radio show host. Here’s what he’s told his listeners in his clip that’s got me so riled up:

  • “…they have found with women who are on the birth control pill that there are these little, tiny fetuses, these little babies, embedded in the womb…they’re just like dead babies on the inside of the womb…and that the wombs of women who have been on the birth control pill have effectively become graveyards for lots and lots of little babies.”
  • “It would seem that there’s a tremendous risk in the use of it {the birth control pill} for the life of children.”

Well, thank you very much, Pastor Ken Swanson. You’ve potentially made a lot of difficult conversations infinitely harder with your lies.

Why This *Really* Annoys Me

I’ve been just as annoyed as anyone by the “science” being touted behind “legitimate rape” and conception and the other recent examples of how people who claim to be experts about female conception have stepped in it with an unsupportable claim about why women get/don’t get pregnant. But Pastor Ken Swanson’s comments strike me as particularly…vile, quite frankly, because:

  • Anyone with a basic understanding of conception and menstruation knows that he’s wrong. I have a hard time believing that Pastor Ken Swanson doesn’t know that he’s wrong.
  • The language that Pastor Ken Swanson uses is extremely emotionally manipulative.

Let me tell you something, Pastor Ken Swanson. It’s difficult enough to explain to women with intellectual disabilities what their sexual health care options are and the positives and negatives of each form of birth control. I know that some of the women that I supported would not have considered the birth control pill (and would have been suspicious of other forms of birth control as well) if they’d heard from a pastor, someone that our culture gives authority, that the birth control pill leaves dead babies in a woman’s uterus and is a “tremendous risk” to the life of children.

Hell, that would have made me give it a second thought if I’d heard it from a Pastor when I was a teenager and a Christian. And there were periods in high school when I wasn’t particularly mentally healthy, either – if I’d been on the birth control pill and heard from someone whose opinion that I trusted and valued (a Pastor would have been on that list at that time in my life) that I was taking something that was creating a baby graveyard in my uterus, there would have been times when that might have triggered some major difficulty for me.

First Amendment…Pastor Ken Swanson can say whatever he wants on his radio show. But it was my understanding that pastors are supposed to help people. I truly question where he intended to help with this, or whether he’s just pushing his own agenda onto an audience with which he has no further involvement after his show is done, leaving other people to deal with the fall-out.

Actually, I wonder how Pastor Ken Swanson sleeps at night.

 

 

Rachel Cohen-Rottenberg Profiles People Who Are “Suffering From Normalcy”

Rachel Cohen-Rottenberg, one of my favourite bloggers, has launched a wonderfully subversive series of memes on the Facebook page for her blog, “Disability and Representation” 

“I’m not making fun of normal people,” she explains to someone. “I’m parodying cultural representations of disability.”

I think that this idea is brilliant, and people visiting Rachel Cohen-Rottenberg’s Facebook page side are certainly getting the idea and getting into the spirit of her campaign. Will the general public, I wonder?

Confession: I’d Not Thought About These Things

I’d been working with disabled people for nearly twenty years, both in volunteer positions and as paid staff, before I started writing this blog. I’d been disabled myself for over a decade. My experiences had given me some strong opinions on some issues with which colleagues didn’t always agree. But, until I started reading the work of other disability bloggers like Rachel Cohen-Rottenberg, I’d never thought about why calling disabled people “inspirational” was potentially offensive (just that I found it puzzling when people called me inspirational), or about how first-person language (which I’d always been told to use) wasn’t necessarily the most sensitive language to use…or about how the “normal” peoples’ best attempts to be inclusive and validating of disabled people fall embarrassingly flat sometimes.

The point of the graphic below, developed by Tina Jones for use on Rachel Cohen-Rottenberg’s Facebook page, is that when you substitute the word “normal” or “normalcy” in all these platitudes where “disabled” or “disability” generally appears, it looks ridiculous – just as ridiculous as it *should* look when “disabled” and “disability” are there, and yet we don’t question that. We need to start to.

An Awareness Building concept design about "Normalcy": A beige ribbon centred in the middle of the graphic has "Normalcy" in black letters stamped across it. The ribbon is surrounded with quotes like, "Raising Awareness One Normal Person at a Time" and "Normal People are Special Gifts from God."

Image Description: An Awareness Building concept design about “Normalcy”: A beige ribbon centred in the middle of the graphic has “Normalcy” in black letters stamped across it. The ribbon is surrounded with quotes like, “Raising Awareness One Normal Person at a Time” and “Normal People are Special Gifts from God.”

I realize, of course, that this may viewpoint may create tension for groups that are trying to reclaim terms like “disabled” and other disability-related words, or who are facing the difficult challenge of “humanizing” disabled people who have been traditionally regarded as so different from “normal” people that there really is a need to convey that message of “We’re not so different”. I don’t think that these memes are about trying to tell people how they can and can’t choose to self-identify, self-advocate, or advocate for others. I think they’re asking people to think about language and images and how they tend to be paired when it comes to disabled people, and about what message we want to send…and whether what we put out there is sending that message.

That’s never a bad process to go through before you put anything out there (I’m doing it right now!)

Anyway, here are some of my favourites from the “Normalcy” campaign so far. Do you get what it’s trying to do?

Image Description: A white adult male with shaggy, dark blond hair and glasses pushed to the end of his nose plays an electric guitar. He is wearing a blue patterned shirt with what looks like a red sweater vest on top. On the picture is printed: "Because he has received years of intensive specialized therapy, most people can no longer tell that this person is Normal. Won't you make sure that all children like him receive the help that they need to thrive?" Keyword: Rachel Cohen-Rottenberg

Image Description: A white adult male with shaggy, dark blond hair and glasses pushed to the end of his nose plays an electric guitar. He is wearing a blue patterned shirt with what looks like a red sweater vest on top. On the picture is printed: “Because he has received years of intensive specialized therapy, most people can no longer tell that this person is Normal. Won’t you make sure that all children like him receive the help that they need to thrive?”

A white woman with shoulder-length brown hair, wearing a yellow bathrobe with small black polka dots on it, smiles at the camera. Sunglasses rest on the top of her head, and she holds a stuffed bird with an open beak against her chest. Across the picture is written: "She's NORMAL. But not in an obvious way. This woman works hard to fit in with her non-normal peers. We think that's AWESOME!" Keyword: Rachel Cohen-Rottenberg

Image Description: A white woman with shoulder-length brown hair, wearing a yellow bathrobe with small black polka dots on it, smiles at the camera. Sunglasses rest on the top of her head, and she holds a stuffed bird with an open beak against her chest. Across the picture is written: “She’s NORMAL. But not in an obvious way. This woman works hard to fit in with her non-normal peers. We think that’s AWESOME!”

A white, dark-haired woman wearing a gray shirt and a yellow zip-up hoodie looks at the camera, wide-eyed. She has an empty, slightly crushed Sprite can sticking out of her mouth. On the picture is written: "This is my courageous friend whose life has been touched by normalcy. Each day she strives to overcome!" Keyword: Rachel Cohen-Rottenberg

Image Description: A white, dark-haired woman wearing a gray shirt and a yellow zip-up hoodie looks at the camera, wide-eyed. She has an empty, slightly crushed Sprite can sticking out of her mouth. On the picture is written: “This is my courageous friend whose life has been touched by normalcy. Each day she strives to overcome!”

Have a great weekend!

Save