I Stand With Wet'suwet'en: Don't Use Disabled People to Shame Protesters

Disabled people can be a very convenient scapegoat to either be the victim or the villain in just about any social issue. When it comes the environmental causes we have certainly been both.

In the often misguided war on single use plastic we are both the villains for needing many single use plastic products. We are also largely ignored as bans on things like plastic straws gain momentum. The latest battle is one where we are being used as convenient victims to shame the growing national protests in support of the Wet’suwet’en hereditary chiefs against the encroachment of a nationalized pipeline going through an unapproved route through their territory.

This issue is also so much bigger than the environment as it is also primarily an issue of Canadian colonialism and racism against Indigenous people. Yet, a British Columbia disability org, Disability Alliance BC wants to reframe an issue about land sovereignty and reconciliation as an issue of accessibility. This is a viewpoint that at least one news outlet seems happy to parrot.

It places the presumed access needs of disabled Canadians over the rights of Canadians to protest and over the rights of Indigenous Canadians.

I am appalled by the colonialism being practiced in my name and I want to express in the strongest terms that Disability Alliance BC does not speak for me.

I condemn completely the very idea a weaponizing disabled people in service to colonialism and placing our comfort and convenience against the rights of Indigenous people. Because, let’s be clear this isn’t an argument about conflicting rights. This is largely an argument against inconvenience. The same kind of inconvenience that everyone is intended to experience as a result of these kinds of protests.

Disability Alliance BC could be spending its time trying to mitigate the inconvenience to disabled people who lives might be disrupted by the current wave of protests. They have by no means shut down all travel in the country. They have instead chosen to shame protesters who want to support reconciliation and the Wet’suwet’en protests, rather than look for available solutions and place the blame where it really belongs. On the doorstep of a colonial government that both seeks to further entrench Canada in colonial violence and which on an every day basis fails to invest in accessibility for disabled Canadians. If Canada cared about accessibility disabled people wouldn’t be able to be used as a stick with which to bludgeon protesters because we would already have options to deal with unexpected travel delays.

If disability and access must come up in this conversation let it be one of criticism of how we still don’t have those options and how that is a structural wrong that should not be placed at the feet of protesters. Let the conversation also highlight the additional barriers Indigenous disabled people face as a result of colonialism.

Do not, however, legitimize the idea that protesters are wronging disabled people. Society already did that. I know I am not the only disabled person who does not want to be used as a tool to deny justice to others. My humanity should not and demonstrably in this case does not come at the cost of the humanity and rights of others.

I stand with Wet’suwet’en

I condemn the rhetoric of division that puts my rights and comfort above the rights of others. Particularly when their rights are being actively attacked by the government. When they face direct intimidation and violence from the RCMP.

I stand with Wet’sewet’en not with Disability Alliance BC

On Deserving to Have your PhD Funded

Image Description: A Photo of my Masters of Art Certificate
Image Description: A Photo of my Masters of Art Certificate

There is a lot of advice about getting advanced degrees, particularly PhDs one of the big ones being

Don’t do it unless you don’t have to pay for it.

PhDs are expensive and time consuming. When I was accepted to my PhD, I was offered a funding package. It barely covers my rent, much less my tuition. My funding is also contingent on whether I am working or not. My health over the last year has been in shambles for a variety of reasons and my ability to work has been compromised. Oh, I’m accommodated but I receive my money in 3 separate payments. The 4 hours a week they pay me to work. Then a smaller amount to that used to be paid in the paycheck but isn’t anymore for some reason. Finally I get another few hundred dollars the following month in recognition of both my funding and the fact that my accommodations state that I am well enough to work 10 hours a week (which is the standard ideal average set by the university. I just need my tasks to be accessible. I never asked for less work.

This 3 payment system makes it difficult to impossible to survive on a budget that already also includes a student loan.

If I wasn’t a PhD student, I would be homeless or a “burden on the state” those are just realities that I have to live with. Being a PhD student keeps me fed.

My research is also going to require field work which will cost money. I will have to return to my hometown and acquire all of my old school and medical records.

I also have to consider whether I have access to research materials in an accessible format. The more books I can own in kindle format, the more organized my research will be. I am of course investing my own money in this endeavour but I am going to come up short.

I have decided to start asking the readers of my blog to consider supporting my PhD work in a number of ways. This decision has lead to a lot of backlash though largely not by the regular readers of my blog.

I am receiving criticism mainly from trolls on twitter but I am also getting shamed on reddit and it all comes down to this idea that if I ask for money that I must be some kind of entitled fraud.

For the record, I’ve thus far been given a whopping $90 which I spent on ebooks. The idea that the simple act of asking for help constitutes entitlement is interesting. If only Jordan Peterson’s fans were of the same opinion about him while he was making thousands a month on the site (until he was kicked off).

I currently make a whopping $45/month on patreon. There seems to be this false idea that the mere act of asking for money or other help immediately results in success is also frequently present.

So do I “deserve” to have my PhD crowdfunded? That’s up to other people to decide. I do know that my research has value and has already peaked the interest of a number of fellow academics (don’t worry fam, I know we’re all poor).

My blog stats are exploding today, mostly as a result of people enraged with the idea that I might be overly entitled for asking for things that I have no control over whether I receive them.

There is also just the issue of what online content counts as the kind that people can “legitimately” turn into businesses. My blog content is often activist in tone and many seem to think that politically active marginalized people can survive on nothing but air because they get very angry when we remind people we need to eat and pay rent. The idea that my activism isn’t work is always ironic particularly in September when my blog stats let me know just how many universities have courses that use my work.

This has never been about whether I deserve to have my PhD funded and everything to do with who is allowed to personally place value on their own work. I am not forcing people to give me money. There is no pay wall on this website.

Do I deserve to get paid for the work I do, yes. Are you personally required to put up the money, no.

Thank you for coming to my rant on work, ability, and worth

How to Support My Work

So now for the very in-depth appeal for support for mu PhD. Please read through this, there are so many ways to help, including just sharing this blog post on social media.

Kindle ebooks read on my iPad are the easiest way for me to read and take notes unfortunately Amazon does not allow people to buy ebooks for others through their wishlist system. I have an Amazon Wish list anyway as some of the books can only be purchased in print or from third party sellers because they are out of print. If you could buy me one of the books that can only be had in print, I would greatly appreciate it. If you want to help fund the ebooks I’ll need you can buy me a gift card and send it to the following email address

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

Become a Patron!

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

All the ways You Can Support Me Completing My PhD in Critical Disability Studies

Image Description: A white woman with blond hair and glasses is smiling at the camera while wearing a white button down oxford shirt under a green cardigan
Image Description: A white woman with blond hair and glasses is smiling at the camera while wearing a white button down oxford shirt under a green cardigan

Don’t I look scholarly? Don’t actually answer that it’s a purely subjective question. As you may or may not know (depending on if this is your first time here) I am currently in year 5 of my PhD and it’s time to get this show on the road. I still have a few requirements that I need to meet called comprehensive exams before I can start on my dissertation properly.

I am forever a PhD student and never a PhD candidate (you aren’t a candidate until you are in dissertation phase)

My future dissertation is tentatively titled “We Still Hide Mad Women in the Attic: An autoethnographic study of how disabled/mad women are treated when I try to take public space.

The dissertation will be an in depth autobiography of my life largely lived in both socially curated and physically forced isolation. My story will be juxtaposed with the real life stories of the mad women history hid away n attics or asylums. The story of hidden disabled and mad women now and in history would not be complete without an understanding of the mad woman in culture. Am I my own person or am I little more than Bertha Rochester raving in her attic for the sole purpose of creating the moral conundrum “is it wrong to cheat on one’s mentally ill wife” (the answer is yes by the way).

In order to complete this research I am going to need to do a lot of reading (of course). My preference for reading academically is to use kindle books on a iPad because it makes taking and organizing notes simple There are, however, a number of books that cannot be had in kindle format. To that end I have created an amazon wish list specific to the books that cannot be gotten in kindle format (I may add more later). That list is

Books I need for my book audit comprehensive exam that cannot be bought for kindle

I have created a similar list for my dissertation at large but the time frame for that isn’t as pressing

Dissertation Books not to found on Kindle

Unfortunately, ebooks are themselves not free and while the selection of academic books now available for kindle is growing but so is the price of ebooks. If you would like to help with my real book fund. You can send me an Amazon Gift Card to

kimberleyjanephd@gmail.com

(this is not my personal email, I will not be answering queries through it. Find me on Twitter if you want to talk)

You can also support me directly financially in a number of ways.

You can sponsor me for a monthly amount on patreon

If you are only able to make a one time contribution you can transfer money to my paypal

If you enjoy a little whimsy with you direct giving you can buy me a coffee (contributions must be in multiples of three uses paypal)

Buy Me a Coffee at ko-fi.com

If you prefer to buy me something that would improve my quality of life

I have a disability accessibility wish list too

If the idea of using a third party site makes you uncomfortable, you can also send me an interac e money transfer direct from your bank account to the email,

kimberleyjanephd@gmail.com

All items and monies received will be used directly to fund my PhD, maintain the running of this blog and cover living expenses (can’t get a PhD if you are homeless and have no food).

If you cannot support me financially but still want to help, share this post widely. Share my other work widely (I get a tiny bit of ad revenue)

As always thank you for your support, I can’t wait to get into the meat of this dissertation. The stories of disabled people are important and far to often not told or worse, told by someone else.

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

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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.

 

 

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