Redefining Independence on the Psych Ward

Image description: A blond white woman wearing a blue, shirt,beige shorts and a fanny pack, walks out of some tall grass arms outstretched
Image description: A blond white woman wearing a blue, shirt,beige shorts and a fanny pack, walks out of some tall grass arms outstretched

I recently spent eight days in the Humber River Hospital psych ward. It was a strange experience, made stranger by the fact that my presence on the ward made it an atypical experience not just for but for those who work there as well.

There are two things that made my stay on the psych ward difficult. First no one told me anything. There’s a welcome package, they apparently give new patients when they arrive on the ward. I received this package the night before I was discharged. So I spent the entire time on the ward not knowing what was expected of me. This was conveniently or inconveniently (depending on your perspective) overcome by the fact that the psych ward was almost entirely inaccessible to me in my current medical state.

I had initially spent my first night and almost the entire next day on the emergency psych ward. They watch you 24/7. There are CCTV cameras pointed at your bed. Yet, I was treated better there than I was on the general ward. The nurses, every single one treated me like a person. They were empathetic to the way I had been violently brought to hospital.

They were as accommodating as they could be. They gave me time to come out of the brain fog that followed my dissociative episode. One nurse went above and beyond to make sure I would get a breakfast and lunch that I would ear.

When I asked to take a shower, they immediately emptied the room that was clearly used for storage so that I could feel a little less gross.

The doctor who visited psych emerge was also kind and empathetic. There is literally nothing to do in the emergency psych department. So she brought me books to read.

So my transfer to the general ward was a bit of a culture shock. I was wheeled up by a porter but then lead on foot to be shown the common room and lunchroom. The importance of knowing these locations is important on the psych ward, I almost never set foot in either.

On the psych ward it became apparent that my resting heart rate was dangerously high. This resulted in my being very dizzy. As a safety precaution I rarely left my room. The one time I did try to independently go to the lunchroom and get my breakfast I became horribly dizzy only to discover that most of my meal was dairy based and I’m lactose intolerant.

I suddenly had try and negotiate food accommodations along with physical accommodations that challenge the very way the psych ward runs.

By not getting my own meals or returning my own trays, I was not demonstrating “independence”. At some point the nurses just start doing sitting/standing blood pressure tests which indicate that my heart rate remains dangerously high. They couldn’t ask me to leave my room. This time when I wanted a shower I asked for a bath chair because I was no longer certain I could stand long enough for a shower without passing out. It took a long time to get that bath chair. I had to ask twice.

Despite my stay in the psych ward being objectively atypical, I was still being judged by the standards of “independence” used by the staff to determine emotional progress. Even though they objectively knew I could not participate in these daily tasks, I was still held to the same standards as anyone else on the ward.

I was in the psych ward for 8 days. Only the first 48 hours were mandatory. I beat my form 1 (the document that says you can be held against your will because you may pose a risk to yourselves or others) easily. Admittedly the attending psychiatrist never mentioned discharging me right away. By that point I had already had a chest X-ray had 5 vials of blood drawn. I was concerned about my heart, so as long as they focused on that I was fine to stay.

My weakness, largely made my stay uneventful. I had the odd spat with a nurse who thought she could run a power move on me but for the most part, I relaxed, napped and read.

My occasional forays out of my room only happened when my sister was visiting and I felt like I had a chaperone. She would return my food tray for me etc. One day I felt up for a walk, so went with my sister to sign myself out. This is where I learned that despite being a voluntary patient, I had no privileges. To add insult to injury, no one at any point had explained that I was under a privilege system at all.

My sister doesn’t like conflict so, she’s already scratching our names off the sign out sheet. I however, stared at that nurse and demanded to know how I could be subjected to a privilege system I had never been made aware of, particularly as a voluntary patient. Then I glared at her until she made a phone call.

The photo at the top of this post was taken during that brief break for freedom.

I was discharged without much fanfare not long after receiving an echo cardiogram there was no medical followup about my heart issues (which have calmed down somewhat since leaving the hospital) or for the dissociative episode I experienced. All I got was a paper with a lack of detail and the diagnosis of psychosis. I suspect the truth is more complicated than that. I’ve been describing it as a dissociative Fugue. I came to myself quickly enough in the hospital after people stop reacting to me with anger or violence.

This is how I was able to so compliant up to the point of inaccess. Yet my way of surviving independently did not match how the people running the psych ward viewed it.

It’s a good thing they didn’t make performing independence a criteria for my discharge. Or I might still be there. I’ll have to wait to receive my records to find out why I was really discharged and if the hospital learned anything useful about me at all.

How you can support my work

Until my life starts to get back to some semblance of normalcy, I hope you will support me in my goal of completing my dissertation in any way that you are able. Whether it be through emotional support or by financially investing in my academic success.

My dissertation is tentatively titled “We Still Hide Madwomen in the Attic”

It will be an autoethnographic (meaning I will be using myself as a research subject) study of how mad/disabled women have been and still are silenced and isolated both directly through things like abuse and involuntary committal to the cultural idea that mad women in attics are just a literary device for gothic novels.

In the immediate, I need to complete my comprehensive exams which necessitates a lot of reading. Some of the books are out of print and hard to find. I have created am amazon wishlist (it’s not exhaustive and will likely be added to). If you could support my work by purchasing one of the books on that list that cannot be had in kindle format, I would really appreciate it.

Kindle books read on an iPad are really the most accessible format for me but Amazon does not allow for the purchase of ebooks through wishlists. So I have set up an email solely for people who want to financially support my work. I would greatly appreciate gifts of amazon gift cards (I’ll even tell you which books you bought me)

The email is kimberleyjanephd@gmail.com

I will not be answering queries about my research through this email. It is solely a way for people who want to support my work to be able to do so. (this is a safety boundary). If you want to talk to me, find me on Twitter.

My research and supporting myself will get past the reading phase and there will be field work in my future. If you would like to help me fund my PhD in the long term you can

support me on patreon

buy me a ko-fi

send me money via paypal

send an e money transfer to the email above (if you have scruples about third party sites)

I also have a generic disability wish list of things that would just improve my quality of life

Thank you for your ongoing support. and just an FYI I’m changing my name socially to Kimberley Jane Erin. You can call me Kim or Jane but I prefer Jane. I am however, not the least uncomfortable with Kim so don’t worry about messing up.

It’s time I really leaned into my identity as a scholar. I hope you’ll support me.

A Long Overdue Update

Image description: A blond white woman with cerebral palsy stands in a patch of tall grass in a garden outside the Humber River Hospital. She is smiling from her brief reprieve from the Psych ward.
Image description: A blond white woman with cerebral palsy stands in a patch of tall grass in a garden outside the Humber River Hospital. She is smiling from her brief reprieve from the Psych ward.

Hi Everyone,

It’s been a while and I’ll admit up front I might not be getting actively back into blogging for a while, though it is on my to do list (which is too long).

I’m just writing this to get you updated on why I disappeared and letting you know that going forward I need to focus on some issues in my life and really getting into the work of my PhD.

Last year, as a member of CUPE Local 3903 I participated in the longest post-secondary strike in Canadian history, something previously considered impossible for an English language university to accomplish. Quebec just has a better culture for getting angry when their educations are threatened.

The strike was long gruelling and full of emotional labour. The emotional labour of constant threats of vehicular death. The constant rhetoric from the university that cast me as an outsider despite my still being a student.

During this time I became estranged from my mother. This was an ultimately healthy decision but because of how long she had kept me isolated and emotionally dependent on her despite her abuse, it was hard. It is still hard but only in that not talking to mum tends to strain all the other family relationships.

The aftermath of the strike did not really calm things down, though I wasn’t threatened with bodily harm quite so much but I had difficulty getting myself regrounded in the academic environment.

I began dissociating and I knew that I wasn’t going to be able to pull myself out of this funk alone. So I went to the doctor and got diagnosed with anxiety, and PTSD (both conditions I am sure were not new just newly officially diagnosed).

I immediately began going to therapy but in my vulnerable emotional state, I chose my therapist very badly. She did help get me onto anti-anxiety meds and helped get me feeling slightly more grounded. Then she spent months isolating me from the few friends I see in person and isolating me more from my online presence, So isolating me from perhaps my strongest support network.

I had during the strike independently pulled back from blogging and some of my more inflammatory online activism. With a few exceptions. I stayed involved in the straw debate, though to a lesser degree than before and I admit I went unintentionally viral with #DoctorsAreDickheads

The stress of the attention was more than I could handle and I pulled away from Twitter even more. It took months for me to realize that my therapist was actually keeping me from moving forward with my life. The realization was uncomfortable and I spent some time trying to unpack it on Twitter

I had a lot of trouble processing that betrayal. I’m not sure I’ll ever know precisely what happened next because I began dissociating, this was quickly joined by a fugue state.

This means I didn’t even know who I was, what I was doing, or who I was communicating with. In my few lucid moments many online friends reached out in concern but because fugues cause amnesia, I assumed that I must have been hacked.

You see for the entire period of time I basically never left my bed. I knew I was unwell, I just didn’t realize that I was posting delirious and often hurtful things online. I’ve seen some of it and chosen to delete much of it.

I doubt I’ll ever get a full picture of what I was thinking or everything I said. I apparently called my brother about 20 times, I only remember two or three of the calls and I’m already mortified.

I understand completely, why people were concerned for my welfare. What I am still trying to come to grips with is that my sister decided to channel her concern over online posts that to my knowledge never threatened violence (there was a ton of sexual harassment and I could not be more sorry). The harm I caused during that fugue was emotional. Yet my sister decided that it was better to call the police than come check on me.

I was placed under what is known as a Form 2 which means the police are going to assume you are violent and you have no option for deescalation.

I made the mistake of trying to deescalate. I was lucid enough to know what cops and paramedics at my door meant but I was still unaware of my delirium induced online posts.

The fact that I was still unwell and prone to delusions, I remained I think surprisingly calm (by which I mean I only fought the police with rhetoric, I got loud) but I was still in a fugue state, I’m pretty sure at one point I thought I was my sister, at another I was convinced I was going to marry the star of the show I’d been watching in my more lucid moments.

I probably had at least 4 separate narratives going but I wasn’t violent.

Yet, I was still grabbed and shackled in the ambulance.

Dark bruise on pale skin from being grabbed while being involuntarily committed

That bruise is gone now but as it faded it revealed the thumb print of whoever it was who grabbed me to shackle me to the gurney.

I was shackled to that gurney for I don’t know how long. I lay there shackled long after I was removed from the ambulance. I was horribly uncomfortable and begged to be let out.

I did eventually convince security to let my left arm free because the shackle was forcing my shoulder into a painful and unnatural position because of my cerebral palsy.

This was my first clue that the psych ward is not prepared for physically disabled people.

I live tweeted much of my stay in the psych ward so you can check out my Twitter for more details on that.

I actually came out of the fugue pretty quickly upon getting to the hospital but I was on a 48 involuntary hold (known as a Form 1). I stayed for 8 days because my resting heart rate and blood pressure were disturbingly high.

I got very little in the way of psychiatric care. The attending physician seemed to be looking for the sort of person who is irrationally violent.

I was extremely compliant on the psych ward.

Well I was extremely compliant until something was inaccessible and then they had to deal with the full force of having me stay on as a voluntary patient just to figure out if something was wrong with my heart. I got cardiology tests on the psych ward that I don’t think the attending psychiatrist knew about in advance.

He seemed surprised that I was on a 24 hour holter heart monitor and was waiting for an echocardiogram. I think he was trying to discharge me.

I was ultimately discharged shortly after I received the echocardiogram. I have yet to hear back if any of those tests had any interesting results.

So I still don’t know if the dissociative fugue was caused by the mother of all panic attacks or if it was exacerbated by illness. Just like the exact details of everything I thought and did during the fugue, I will probably never know. I however, suspect that this latter ignorance is more likely to be blamed on how I was hospitalized and how my symptoms were initially interpreted. I didn’t get a blood test until I’d been there nearly 48 hours and was lucid all of the time.

Skipping ahead a bit (again see Twitter for more Psych ward details), I am now back home recuperating from my ordeals.

In the immediate I need to do two things complete my complaint against the therapist who tried and failed to derail my life (this is going to be very stressfull)

In order that my life not get further derailed, I need to get more actively focused on my PhD studies again. To that end my therapist from hell followed by my stint in the Psych Ward gave me a great idea for a dissertation topic and that is what I will be focusing my energy on.

Hopefully, if my life calms down (like after I’m done with the complaint against my former therapist) I will blog a little more regularly again.

Until then I hope you will support me in my goal of completing my dissertation in any way that you are able. Whether it be through emotional support or by financially investing in my academic success.

My dissertation is tentatively titled “We Still Hide Madwomen in the Attic”

It will be an autoethnographic (meaning I will be using myself as a research subject) study of how mad/disabled women have been and still are silenced and isolated both directly through things like abuse and involuntary committal to the cultural idea that mad women in attics are just a literary device for gothic novels.

In the immediate, I need to complete my comprehensive exams which necessitates a lot of reading. Some of the books are out of print and hard to find. I have created am amazon wishlist (it’s not exhaustive and will likely be added to). If you could support my work by purchasing one of the books on that list that cannot be had in kindle format, I would really appreciate it.

Kindle books read on an iPad are really the most accessible format for me but Amazon does not allow for the purchase of ebooks through wishlists. So I have set up an email solely for people who want to financially support my work. I would greatly appreciate gifts of amazon gift cards (I’ll even tell you which books you bought me)

The email is kimberleyjanephd@gmail.com

I will not be answering queries about my research through this email. It is solely a way for people who want to support my work to be able to do so. (this is a safety boundary). If you want to talk to me, find me on Twitter.

My research and supporting myself will get past the reading phase and there will be field work in my future. If you would like to help me fund my PhD in the long term you can

support me on patreon

buy me a ko-fi

send me money via paypal

send an e money transfer to the email above (if you have scruples about third party sites)

I also have a generic disability wish list of things that would just improve my quality of life

Thank you for your ongoing support. and just an FYI I’m changing my name socially to Kimberley Jane Erin. You can call me Kim or Jane but I prefer Jane. I am however, not the least uncomfortable with Kim so don’t worry about messing up.

It’s time I really leaned into my identity as a scholar. I hope you’ll support me.

#HotPersonInAWheelchair and the Longevity of Bigotry

Four Years ago former Jeopardy Champion Ken Jennings tweeted an offensive joke

So, why am I writing about a four-year-old tweet? Isn’t it old news and basically irrelevant now?

Unfortunately, no. This tweet caused controversy at the time and because it is still online, people are still using it to harass disabled people. I had four people use it against me yesterday.

The problem with things like this is that they don’t just fade into obscurity. Periodically, someone comes across it and starts engaging with it again. The reason I was harassed (and yes I would classify it as harassment) about that tweet yesterday is because I commented about how people were still engaging with my response to the tweet. Which means people are still engaging with the tweet is still impacting people.

I tweeted my displeasure that Jennings hadn’t deleted it. He actually responded to me with this justification.

This seems like a good responsible take, except that it falls apart the second you remember that people are still being harmed by that tweet.

Twitter does not have a mechanism to encapsulate old problematic tweets with an explanation about how you now understand that it was harmful, that you regret doing it and you want to leave it up as a reminder of the harm it did. Even if Jennings wrote something to that effect among the replies, there are 1600 of them. People can hardly be blamed if they don’t know he’s sorry about it now. It also doesn’t stop the tweet from being used by others who do just think insulting wheelchair users is just hilarious.

A far better response would have been to take a screenshot and write and publish an apology and then delete the tweet. Jennings is famous enough that he could have found somewhere to publish that apology. Then he wouldn’t be whitewashing his past and he would have stopped the tweet that he supposedly now regrets from being used to harm others.

Someone accused me of just going looking for something to be angry about. They justified this argument based solely on the fact that the tweet is four years old and I talked about it yesterday.

But, it’s not going to find something that periodically shows up in my notifications. That’s just acknowledging that people are still interacting with four-year-old bigotry and that’s worth talking about. Bigotry doesn’t necessarily get stale and less bigoted with age.

You can’t absolve yourself from past bigotry if it is still harming people. Particularly if there is a way to stop that harm (in this case it’s as easy as deleting a tweet).

Jennings wants to be patted on the back for what amounts to fake contrition. I can’t believe any claim of taking responsibility if taking responsibility means justifying the continuation of harm.

One silver lining of this tweet’s latest resurgence is that it has inspired the #HotPersonInAWheelchair which is a brilliant celebration of disabled beauty and confidence. I do so love the confidence and snark of the disabled community.

Annie Segarra (you can support her on patreon. She also has a YouTube Channel) started it off with this

The whole hashtag is well worth a look, but be advised that some of the images may be NSFW. I certainly hope this protest will be stronger than the bigotry that inspired it.

Jennings should still delete that tweet though and finally really take responsibility for it by apologizing somewhere other than Twitter.

 

 

How to support my work

I am currently fundraising to attend the International Disability Law Summer School. You can donate to that on GoFundMe

Click Here to Donate

If you liked this post and want to support my continued writing please consider becoming a patron on patreon.

Become a Patron!

If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

Buy Me a Coffee at ko-fi.com

If you want to support my work but are unable to do so financially, please share this post on your various social media accounts.

Why Everyone Thinks that They Care About Disability Rights When They Really Don’t

On Thursday, Rachel Maddow asked “Who campaigns on gutting the American’s with Disabilities Act?” in a segment that included no interviews with disabled people.

She asks the question and seems to understand that the answer is “no, one” but she fails to ask or investigate why no one would ever openly say

“Send me to Washington, I’m going to stick it to disabled people. Send me to Washington and when I take my votes, you’ll see blind people, and people in wheelchairs being hauled out of the gallery in the house and arrested because I’m taking away the most important parts of the most important legislation that has integrated disabled people into mainstream life and American public accommodation”

or have an

“I’m a wheelchair user’s worst enemy caucus”

but still, vote in favour of legislation that will invariably harm disabled people.

Because, to be clear, this question isn’t just about the HR 620 vote that Maddow is addressing in that segment. That’s just the latest example of the say one thing but do the opposite phenomenon that is an all too common aspect of disability-specific legislation and policy in the United Staes and beyond.

This phenomenon was also front and centre in every attempt to repeal the Affordable Care Act.

It is present in the continuing controversy about austerity measures and benefits cuts in the United Kingdom.

It can be found in the fact that Toronto’s Transit Commission is unlikely to meet the goal of making all subway stations accessible by 2025 as the Access for Ontarians with Disabilities Act (AODA) requires.

This is a really common thing. You ask a random sampling of nondisabled people if they support more rights and opportunities for disabled people and the majority if not all will emphatically respond with a “yes”

If you ask them to follow through with the actions needed to make that ideology a practical reality, suddenly they’re either no longer available or they start making excuses.

There are a number of factors at work here, to create this paradoxical reality where disability rights are being clawed back or are under threat and yet most people when asked will passionately claim that they love disabled people and want them to thrive. It would take more space than I’m sure you have attention for to go through all of it (it could fill several books) but I’ll try and go through a few of issues at play. It all boils down to a single idea though.

The bar for what constitutes solidarity for disabled people is so low that simply not actively hating us is considered a radical act. Put another way, people have convinced themselves that simply reacting with the appropriate emotion is considered an act of resistance. As opposed to actually acting to resist systems that oppress disabled people.

Some of this is culturally constructed. One of the big reasons people can say one thing but let the opposite thing happen is because of how we understand poverty.

Western cultures all generally have some kind of understanding that there are portions of the population that are going to require assistance. They may differ on how they think those people should be helped. Should the government be in charge? Should it be nonprofits? Should we leave it to religious institutions?

Ultimately, who’s in charge is irrelevant because inevitably people are fine with the amorphous idea that people who are poor, sick, disabled, or elderly need and deserve assistance. Problems show up as soon as people start to act on those ideas and the need is too great for the resources available. Instead of looking for more resources, people start debating about “who really deserves to be helped”.

That’s where narratives of the lazy poor or benefits cheats come from. Not because those are widespread phenomena but because doubt is useful to people who either don’t know how to help or feel that too much is being asked of them. So they come up with excuses about why the person who needs help isn’t really deserving after all.

Disabled people have long found themselves firmly in the category of people deemed worthy of assistance but they often don’t get it. Consider the “ugly laws”, a set of policies and bylaws often incorrectly assumed to ban disabled people from public spaces outright. They were, in fact, more accurately anti-vagrancy laws. They were often premised on the idea that disabled people were justified in begging. The problem was they were convinced that people were faking disabilities to unfairly gain sympathy.

While that undoubtedly did happen it likely wasn’t as widespread as people thought. The suggestion that, that beggar might be faking his war wound was enough doubt to allow people to not only feel justified but righteous in not giving the poor money. “The ugly law” also allowed for people who were begging to be removed from the streets. Often specifically under the guise of removing the “riff-raff” so that the truly deserving poor would not be disadvantaged.

That dichotomy of the deserving and undeserving poor allows for people to maintain the idea that they want to help poor and disadvantaged people (the deserving poor) while putting up ever more restrictive barriers to getting access to that assistance (the actual poor…excuse me the “deserving” poor).

A lot of social services are delivered with expansive mission statements that do not seem to match the output of those services.

Disabled people, in general, have theoretically maintained “deserving” status throughout the history of social services in the last few centuries. Yet we remain underserved.

The rhetoric never seems to match the output.

Consider how British Prime Minister Theresa May talks about Personal Independence Payments (AKA PIP a financial benefit for disabled people in Britain) in the midst of real concerns over the impact of cuts. These statements were made in the context of there being clear identifiable harms happening as a direct result of government policy.

“If you look at what we’ve been doing on disability benefits, what we have done is look at focusing disability benefit payments on those who are most in need. In fact, we are spending more on disability benefit payments than has been done by any government in the past,” she replied.” (emphasis mine)…

“We have changed the way that disability benefits have been paid and I know there are some issues that people continue to raise about assessments that are made on those payments. But we will continue to be moving to a system that ensures we are supporting those most in need.” (emphasis mine)

In the face of cuts, the official line is still “the people who need it are getting help” the implication is thought that the people who saw their payments cut or lost benefits altogether are no longer in need. So, if they complain they are lazy scroungers.

It doesn’t matter that the restructuring of benefits did not come as a result, a large scale movement of disabled people into work. People were not becoming spontaneously cured. Their needs didn’t change. The only difference is how the government defined them.

People also can’t seem to remember that disabled people deserve access to public spaces the second money comes up. It’s always too expensive to make things accessible. That’s the basic crux of HR 620, the legislation seeking to gut the ADA.

It’s just really unfair that people have to actually make an effort to make their businesses accessible. It’s a step too far. Can’t we all feel really good that the ADA exists? Do we really have to follow it through? Can’t we just bask in the glow of the intentions behind it?

Though as the Toronto Transit example points out even keeping accessibility legislation as is won’t stop people from not following through with its requirements if they can claim it’s too expensive.

I wonder sometimes how much it costs to build steps. To pour the concrete for that one step into a building. How much do stairs cost to go between floors? How much does building the accessibility of nondisabled people cost? Is it more than a ramp? Is it more than the lowered sink and tilted mirror in the bathroom? Did the other sinks and mirrors cost so much more? or is it just that the things that accommodate disabled people in those spaces are always seen as extra?

Disabled people are a cultural paradox. We are both widely considered deserving of rights and dignity but if we are denied them, little is done and excuses are made.

The fact that disabled people are now more likely to demand meaningful inclusion and not simply settle for the subsistence of charity has also challenged the historically paternalistic view of disabled people.

They are supposed to save us. Often from the ravages of our own bodies and minds. We are not supposed to say that we really need saving from exclusion and systems that keep us in poverty.

Unfortunately, people still look to charity as not only the best way to assist disabled. On this front charities are fundamentally failing the people they claim to want to help. Awareness is big business but the bar is unfortunately not set at meaningful understanding of the cultural and economic status of disabled people. They instead far too often ask only for sentiments. In short, they ask for nondisabled people to affirm that they do not hate us.

From the Cerebral Palsy Foundation’s functionally meaningless “Just Say Hi” campaign which basically asks that people prove that they are not afraid of disabled people by saying “hi” to them.

It doesn’t interrogate why people are uncomfortable around disabled people. It doesn’t question whether disabled people want to be said “hi” too just because they’re disabled. It doesn’t consider how this campaign contributes to a toxic culture of voyeurism that strips disabled people of privacy.

Easterseals has recently rolled out its Celebrate, Don’t Separate campaign which is supposedly about changing the way people see disability. The campaign is filled with the voices of disabled people explaining how they want to be seen.

What action then does Easterseals recommend people do?

Do they want you to call your government representatives and demand action on inclusion in the workforce or in education?

No

Do they want you to consider ways that you can make your home/workplace/school more accessible?

No

Do they want you to donate money to create a fund to invest in accessible infrastructure?

No

They want you to take a photo of you hooking your index finger with someone else’s and posting on social media.

I can’t think of a more empty gesture.

We already know that people find it all too easy to express warm and fuzzy sentiments about disabled people. It’s the work of making those sentiments a practical reality that they can’t seem to grasp.

Empty gestures that lack meaningful action only reinforce the idea that conjuring up the right emotion is a radical act. It lets people think that they are either helping or at least not contributing to the problem as long as they can call up a warm and fuzzy feeling at the general concept of inclusion without having to create it. The fact that we don’t live in a world that can live up to the intentions of existing policies and legislation is largely irrelevant.

Hell, we live in a world where those intentions are held up as evidence of success even as they clearly haven’t been lived up too or are being actively undermined.

Any campaign built on recruiting sentiment instead of action needs to be abandoned.

If you claim to care about disabled people and our rights, be prepared to act in defence of them.

Here are some things that you can actually do.

Call politicians about bad disability-related legislation.

Attend protests in support of disability issues. Don’t just gasp and clutch your pearls when ADAPT activists are being arrested and dragged out of their wheelchairs. If they get arrested, you should step into the protest in their place.

Donate to charities and organizations that are run by and for disabled people

Support disabled content creators. Put money in the hands of disabled people.

Do not hide behind a generic feeling of fellowship and good intentions. Make sure those intentions are matched by measurable outcomes.

 

 

How to support my work

I am currently fundraising to attend the International Disability Law Summer School. You can donate to that on GoFundMe

Click Here to Donate

If you liked this post and want to support my continued writing please consider becoming a patron on patreon.

Become a Patron!

If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

Buy Me a Coffee at ko-fi.com

If you want to support my work but are unable to do so financially, please share this post on your various social media accounts.

Dear Judith Newman, I’m Writing this For You because You Didn’t Write For Me

 

boycott to siri

Image Description: Text “BoycottToSiri” in white on a black background

 

Dear Judith Newman,

I have not read your book To Siri With Love and I frankly don’t intend to. I know this will frustrate some people, maybe even you but I don’t actually think it is relevant to the thing that I want to criticize. I have seen my fellow actually autistic people in pain from your book. I have read their critiques and there are things about your book that quite frankly are unlikely to be saved by added context. The transphobia that exists in the introduction to your book, that you wrote that you wanted the power to sterilize your son, the sexist and disrespectful way you referred to Amythest Schaber.

Yes, yes I know, you’ve since said that you no longer plan or intend to sterilize your son. The thing is it’s too late. You published that awful bigotted sentiment in a best selling book, you can’t take it back now. The damage of that awful statement is already done. Even if you remove it from subsequent editions, it’s still out there and that message will be stronger and longer lasting than any weak backpedalling you do now.

You claim that you apologized to Amythest but as far as I’ve seen you’ve at best made a fauxpology and at worst you’ve simply made excuses. You also still clearly don’t understand why what you did was wrong, so I will again try to explain it to you. There are two major issues.

You described Amythest as a manic pixie dream girl. This term describes a narrative device where a female character (usually quirky) exists entirely for the benefit and consumption of a straight male protagonist and the presumed straight male audience.

You did somewhat address this critique but I have yet to see an actual apology. You have so far only been sorry that your intent was not effectively conveyed. You say that you thought the term was just a more modern version of gamine (a word so obscure I admit I had to look it up). You were just trying to be down with the kids. This response shows that you didn’t understand the other part of why calling Amythest a manic pixie dream girl was inappropriate.

You shouldn’t have been describing Amythest at all. What does what Amythest looks like have to do with the YouTube videos you were citing? Nothing. Reducing Amythest to a physical descriptor regardless of the underlying meaning of the intended compliment was itself inappropriate. People did not need to know that you think Amythest is gamine (a girl with mischievous or boyish charm) to know those videos are full of great information.

The thing I really want to talk to you about though is your response to the backlash from actually autistic people. You brushed off those criticisms by saying that you did not write your book for us.

This is a big problem especially for someone who claims to be autism friendly. With this statement, you prove that autistic people are just props for you. You did not care about the impact of this book on us. You also hide behind stereotypes to deflect from criticisms.

Apparently, we can’t understand your book because you put jokes in it. I can’t speak for all of us but I assure you there are many autistic people who understand jokes. We also know when they are not funny or at our expense.

There is something so utterly isolating about being told that a book where autism is central to the narrative was never intended for autistic people. Are we not part of the population? Do we not read? Shouldn’t you have considered that we might read it? That we are hungry for good representation?

If you are as autism friendly as you claim, shouldn’t you care more about what we have to say? Did you consider getting a sensitivity reader before you published?

You did not write for us and because of that regardless of the content of your book, you promoted our continued marginalization.

You wrote about us without our input to be consumed by people who already think of us as other. By erasing us from your inteded audience you turned us into zoo exhibits.

You did not write for us and the only real reason for forgetting that any part of the population might be part of your audience is because you forgot or don’t acknowledge that we are.

I write this for you because you did not write for me and I want you never to forget that autistic people read your book anyway. autistic people had opinions on your book anyway and you did not listen. Worse than that you have tried to actively silence us.

You did not write for us. Well too fucking bad, we remember that we human even if you and Harper Collins forgot. We’ll read whatever we want and protest when it hurts us. Rave reviews from Jon Stewart be damned.

I write this to you to remind you that regardless of your intent you have caused harm and your response to that has been erasure.

I write this also for anyone who thinks they can write about a marginalized group to which they do not belong and deflect backlash with “well I didn’t write it for you” as though that erases the harm instead of increasing it tenfold.

Sticks and stones may break my bones but silencincing autistic voices hurts far more than me.

Sincerely,

Kim Sauder (Actually Autistic)

 

How to support my work and give money to an actually autistic person who does not have a book deal with Harper Collins

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#KiehlsxAutismSpeaks: Buying Face Cream won’t Help Autistic People & Neither will Autism Speaks

 

Matthew McConaughey

Image Description: A screenshot of Kiehl’s Autism speaks campaign video. Actor Matthew McConaughey is on the right. While text reading “with every share Kiehl’s is going to donate $1 to its Autism Speaks campaign   * up to $200,000 benefiting Autism Speaks”

 

There is so much wrong with the #KiehlsxAutismSpeaks campaign that I hardly know where to begin. The campaign has two components, the first is a consumer component which donates a portion of sales to Autism Speaks. The second is a social media campaign which raises money based on the number of shares a video featuring Matthew McConaughey gets on Twitter and Instagram.

 

There are issues with the messaging of the ad. There are issues with the methodology of the campaign self.  There are issues with the fact that the campaign is linked to Autism Speaks which is a very controversial organization within the autistic community.

The ad itself falls into the trap of so many public charity fundraisers for disability. It utilizes problematic language by defaulting to person first language when autistic people tend to prefer identity first language. There is also the focus on autistic children. This is an issue for a couple of reasons one of which ties into the complex connection to Autism Speaks. The other is simply the fact that so many of these campaigns focus on disabled children and tend to forget that those children grow up. This creates a real and serious service gap which tends to leave disabled adults without resources.

The connection with Autism Speaks makes it worse because as a result of their history of minimizing not only the experiences of but even the reality of autistic women, there is a real trend of late diagnosis or non-diagnosis. This means there are countless autistic women who did not have the benefit of services as children and who have to learn to navigate an autism diagnosis as adults with little or no support.

Autism Speaks did this as a result of the historical and inaccurate belief that autism is more common in boys. They created an entire campaign around this misconception. One of their best-known campaigns is likely the Light It Up Blue campaign which was designed specifically to recognize that false reality. Blue was meant to recognize that boys were more likely to be autistic. Despite new and continued research showing that women are systemically underdiagnosed with autism, the campaign continues. Also, focusing on autistic children alone ignores the generations of women who were not diagnosed because autism was not considered to be an option.

Charities, in general, have a tendency to focus on children because they are perceived to be more palatable than their adult counterparts. This has long term consequences in major gaps in access to services and resources by disabled adults. It also leaves a cultural gap where disabled adults simply don’t appear and are thus not expected to actually show up in society.

So charitable giving is often fraught with problematic messaging in general. Autism Speaks however, is more problematic than most. This is because it is both one of the largest “autism advocacy” organizations and it is also deeply unpopular with autistic people to the point that some have labelled it a hate group. The Caffeinated Autistic has a pretty good run down of many of the serious concerns that autistic people have regarding Autism Speaks.

Some of the primary concerns include the generally low percentage of funds (only 3%) that actually get spent annually on actual services for autistic people and their families. So, the Kiehl’s video campaign if it reaches the maximum 200,000 shares will only really amount to $6,000 going to actually helping autistic people. 63% of Autism Speaks’ budget is spent on fundraising and raising awareness.

The kind of awareness that Autism Speaks has raised in the past is deeply troubling. They released a video which I really demonized autistic people and suggested that they invariably ruined the lives of their families. The video tries to make the distinction between autistic people and autism but in reality, autism is not something that is or can be separated from the person.

 

*video transcript at the end of this post

They also produced a documentary called Autism Every Day (link is not to the video but there is a link to the video in this article) which featured a clip of a woman describing her fantasies about killing herself and her autistic child while that child was in the room.

Autism Speaks has a track record of promoting dehumanizing narratives around autism. They also have a history of not having any actually autistic people in positions of authority within the organization (this has changed somewhat recently). They have made some cosmetic changes to their messaging recently but they still largely benefit from their old messaging and they do not challenge or cut ties with individuals and organizations which fundraise and “raise awareness” on their behalf (I wrote about this previously).

So what kind of awareness is this campaign actually raising? I would argue none at all. We are well past the point of being able to count simply acknowledging the existence of autism and autistic people as meaningful awareness. People know that we exist. What we need now is for people to actually engage with creating a culture and a society that actually makes our lives better. As autistic writer, Sarah Luterman points out that Kiehl’s describes their special face cream (which is just a rebranded version of a product they already offered) as “a daily face moisturizer to promote autism awareness.” Luterman then astutely points out “[t]he site does not elaborate how exactly a face moisturizer would promote awareness of anything.”

Hiding behind a celebrity face and making the fundraiser so effortless also endorses uncritical engagement with a very problematic charity. People simply assume that the charity is good because a cosmetics brand and Matthew McConaughey told them so. It does not suggest that they actually engage personally with Autism Speaks in any way or engage with autistic people themselves. It may be a very effective way to raise money but it is a particularly useless way to raise awareness and it is a potentially harmful way to raise awareness. It emboldens an organization which is unpopular with the people it purports to speak for. It is infinitely ironic that an organization which calls itself Autism Speaks has spent the vast majority of its existence speaking over and silencing actual autistic people. In fact, we have our own organizations and engage in self-advocacy. The Autistic Self Advocacy Network and the Autism Women’s Network are too great examples of organizations run by autistic people for autistic people.

This campaign tells people that they can benefit a marginalized group simply by buying something. Not through any actual engagement with that group. Which reinforces ideas of separateness and the continued proliferation of false ideas around autism and autistic people.

It’s a fundamentally dehumanizing use of a saviour narrative which positions autistic people as a group needing to be saved by nonautistic people.

It’s also that truly ineffective approach where people buy something and it supposedly helps a charity. Which presents a very self-serving narrative of solidarity. “Buy a face cream that you’ll benefit from and help someone without doing anything else” That sort of campaigning particularly when trying to help a marginalized group of people is particularly ineffective because for meaningful change to occur in raising the status of an oppressed group actual engagement is needed. This is the opposite of that. This tells people that they can help a marginalized group at a distance without any meaningful action. It maintains the “othering” of autistic people.

Many autistic people have spoken out of about the campaign particularly on Twitter where the Matthew McConaughey video is being widely shared. There is even a change.org petition asking Kiehl’s to reconsider its partnership with Autism Speaks. I would add my voice to those autistic people who are asking you not to support this campaign or Autism Speaks in general.

This kind of ad campaign doesn’t raise awareness so much as it reinforces the “otherness” of autistic people. It suggests that non-autistic people can be the helpers and saviours of autistic people simply by buying face cream or sharing a video on Twitter or Instagram. It fundamentally does not in any meaningful way raise awareness about autism or autistic people.

I would ask that people take meaningful steps to creating a culture and society that is accessible to autistic people and which does not require us to be either cute children or threats to the happiness of everyone around us.

If you want to actually help autistic people and to actually be aware of us, I would suggest the following autistic activists on Twitter (just search for #ActuallyAutistic), reading autistic writers and actively avoiding and speaking out against campaigns which supports harmful organizations and which present sharing the video and buying face cream as meaningful engagement.

 

How to support my work
If you liked this post and want to support my continued writing please consider becoming a patron on patreon.

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If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

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*transcript courtesy of the Autistic Self-Advocacy Network

I am autism.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.
I know where you live.
And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.
I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.
And to autism I say:
I am a father, a mother, a grandparent, a brother, a sister.
We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the Eurpoean Union. We are the United Nations.
We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.
We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.
Our capacity to love is greater than your capacity to overwhelm.
Autism is naïve. You are alone. We are a community of warriors. We have a voice.
You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.
You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?
You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.
Autism, if you are not scared, you should be.
When you came for my child, you forgot: you came for me.
Autism, are you listening?

 

 

 

 

The Ineffectiveness of Sentiment Masquerading as Disability Solidarity

UN quote

Image description: Abridged quote from 2016 UN Report. It reads “The State party have met the threshold of grave or systemic violations of the rights of persons with disabilities”

We live in a world that is fundamentally inaccessible to disabled people. Physical access to public space is still a significant barrier. Social policies also make it difficult for disabled people to participate in society. Yet, these issues rarely make the news unless they are perceived as particularly callous.

Consider when Calgary Airport removed wheelchair accessible spaces to put in reserved space for Lexus Vehicles or the proposed dementia tax in the UK. These issues cause outcry and change to those specific incidences. The rage that these situations is inspired by the idea that these sorts of things shouldn’t and generally don’t happen anymore.

It is a long-standing sentimental response to overly callous behaviour. Consider the 1993 Canadian federal election where the Progressive Conservatives were faced with fury over an attack ad that was perceived to belittle then Liberal Leader Jean Chretien based on his facial paralysis as a result of Bell’s Palsy.

Video Description: Audio attacks Liberal policies while still close-up images of Jean Chretien’s face are shown.

This was met with a large amount of backlash. Some even credit it with the Progressive Conservatives (PC) losing the election. Though that is impossible to prove and unlikely considering the PC’s were already low in the polls before the ad ever aired.

Quick rage at easily identifiable wrongs against disabled people is common but it rarely leads to meaningful action or even comes from an awareness of the lived reality of disability.

This is probably best exemplified by the continued referencing and indignance around Donald Trump’s 2016 mockery of Serge Kovaleski. Though he is tellingly most frequently referred to not by his name but simply as “the disabled reporter”.

Outrage over that incident both obscures the racism and Islamophobia that inspired Trump’s actions and essentially reduced solidarity to disabled people to the ability to identify and condemn specific incidences of bullying or discrimination against specific individuals.

This ability for callous treatment of disabled people to inspire the ire of nondisabled people extends beyond election campaigns. Consider this tweet I can across yesterday.

It includes an image of text from a Dear Prudie segment from Salon which reads,

Q. Daughter’s friend being in wedding: My 27-year-old daughter and her best friend, Katie, have been best friends since they were 4. Katie practically grew up in our house and is like a daughter to me. My daughter recently got engaged to her fiancé and announced that Katie would be the maid of honor (Katie’s boyfriend is also a good friend of my future son-in-law). The problem is that Katie walks with a pretty severe limp due to a birth defect (not an underlying medical issue). She has no problem wearing high heels and has already been fitted for the dress, but I still think it will look unsightly if she’s in the wedding procession limping ahead of my daughter. I mentioned this to my daughter and suggested that maybe Katie could take video or hand out programs (while sitting) so she doesn’t ruin the aesthetic aspect of the wedding. My daughter is no longer speaking to me (we were never that close), but this is her big wedding and I want it to be perfect. All of the other bridesmaids will look gorgeous walking down the aisle with my daughter. Is it wrong to have her friend sit out?

Prudence quickly takes the questioner to task for her easily identifiable bigotry.

The key here is that the bigotry is overt and easily identifiable with a clear individual victim.

This is I suspect largely why incidences like this illicit public censure. It is less to do with an understanding of the social realities of disability as a disabled person who responded to the tweet points out,

The issue for nondisabled people is the public display of horrific behaviour, not a real desire to understand how widespread the issue really is. As long as the harm happens out of sight. People don’t seem to care. It is a purely performative and self-serving kind of solidarity. The response is simply condemnation without action or even a real awareness of the extent of the issue.

Horror at these incidences rarely results in meaningful action. Consider when ADAPT activists were protesting the proposed ACA repeal. People stared at the news in horror as images and videos of activists being dragged from their wheelchairs by police. The response predominantly stayed at horror and condemnation. Sure more people than ADAPT were actively protesting the ACA repeal but in the face of horror and condemnation of that specific treatment of disabled activists. The response stayed at horror and condemnation. It did not spark a large solidarity protest at Mitch McConnell’s office. People stayed home and clutched their pearls at the images on their computer and television screens.

Disability solidarity far too often stops at sentiment and condemnation and I can only credit this to the continued widespread ignorance of the realities of being disabled and continued systemic ableism.

How can people express shock at isolated incidences of the mistreatment of disabled people but not me moved to protest the systemic inequality disabled people experience.

In the UK for the second time in two years, the UN has condemned grievous state sanctioned human rights abuses against disabled citizens. That situation did not come from isolated incidences of cruelty performed by a single easily identifiable villain. That situation was created and maintained by the systemic willingness of millions of people across political lines to disregard the humanity of disabled people.

But sure Donald Trump being an asshole to a disabled guy that one time was bad.

In Canada, disabled people experience unequal access to healthcare and are screened out of eligibility to immigrate to the country.

But sure pat yourselves on the back for the 1993 Liberal election victory by misguidingly associating it with a nationwide moment of solidarity against bigotry.

I have intentionally made this post about international realities to really highlight how much farther we have to go than the mere condemnation of easily identifiable moments of bigotry.

Disabled people need more than sentimentality. We need action. We need change. We need people to question their own prejudices and how they might be contributing to the systems that oppress us and keep us from fully participating in the world we live in.

People need to get over the idea that society has moved beyond cruelty to disabled people. It hasn’t and the misguided belief that it has actively maintains systems of oppression.

 

 

How to support my work
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If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

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If you want to support my work but are unable to do so financially, please share this post on you various social media accounts.