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.

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.

The Shape of Water is a Toxic Romantic Fantasy: The Issues With this Disability Romance Narrative

 

ShapeWater-tank

Image Description: A still from The Shape of Water. Sally Hawkin as Elisa, a dark haired woman shown in profile has her hands on the glass of a large tank. On the other side a humanoid but scaly creature with webbed hands gazes back at her.

 

This post contains spoilers

 

I know I’m late in presenting an opinion on Guillermo Del Toro’s The Shape of Water but considering that the Oscar nominations were just released and Del Toro’s film has garnered a number of nominations including Best Actress for Sally Hawkins, I may be late but I’m certainly not too late.

The Shape of Water is basically a dark and flipped to take on a combination of Disney’s and Hans Christian Andersen’s original The Little Mermaid. Instead of a sea creature wanting to walk among humans, a human wants to be with a sea creature. Elisa, played by Hawkins is a woman who has no voice. She didn’t sell it to a sea witch but rather experienced an undefined violent injury to her vocal cords as an infant.

Unlike her Disney counterpart Ariel, Elisa doesn’t want to be separated from humanity around her but is instead ostracized because of her disability. In fact, at the end of the film, she seems prepared to give up her monstrous lover in order to stay with people. It is only because she is mortally wounded and no longer given a choice that she ends up in the water with her beloved creature.

Her character—like all of the characters in the film—is one-dimensional. She is a mishmash of disability stereotypes. She is a social outsider who is largely perceived to be “other”. She clearly longs for more inclusion but is unable to get it. She experiences only simplistic emotions that seem more appropriate to a toddler than they do to a grown woman who has not one but two gratuitous masturbation scenes (so you can throw in a creepy sexualization of innocence as well).

The lack of emotional range for the character is really down to the performance given by Sally Hawkins. I have seen many people applaud the silence of her performance but silence isn’t a performance, it is a narrative choice. A performance would be everything that the character does outside of that silence. Which in this case is predominantly very simplistic facial expressions and a very little amount of sign language. What that amounts to is that Elisa’s character has less to do with her character or the performance given by Hawkins than it does with the storytelling around it.

Everything about the narrative shows how alone Elisa is. She lives alone in a poorly furnished apartment. Her neighbour and only nonwork-related friend largely ignores her if it doesn’t suit him. She is an orphan who experienced violence. She is so ignored at work that she can take her lunch breaks with her employer’s top-secret project and have it remain largely unnoticed even by her closest coworker.

Her only driving motivation is to be wanted. To be Included. She ultimately gets one and not the other which is what makes this film a nightmare.

Del Toro masterfully sets up a narrative where Elisa’s ostracization and treatment are clearly the fault of people around her. The film directly acknowledges that her oppression is socially constructed and then it lets the world get away with it.

Even at the end Elisa never intends to run away with her lover. She saves him from vivisection and lets him camp out in her bathroom but the relationship has an expiration date. The day he can be safely released back into the water.

Even as they stand on the edge of the canal and the creature asks her to go with him, she refuses. She still wants the human world. She still thinks her place is there. She again loses her right to choose though, after her boss, the film’s villain shoots her. She is either dying or dead when she is lifted and carried into the water by her lover. The lover, she intended to let go. He either heals or resurrects her in the final moments of the film enabling her to breathe underwater so that they can spend their lives together. Away from the world that rejected them both. This is supposed to be romantic.

Even if you ignore the rejection of Elisa’s agency when she said that she intended to stay on land. The film acknowledges that the barriers she experienced were socially constructed and then concluded with “It’s better to just leave”. Leave and live what is implied to be a solitary existence where she has only her lover for company.

It is interesting how closely this conclusion mirrors my own youthful fantasies about romantic relationships (except that I kept my imaginary lovers human). I often felt like any relationship I might find would be a once in a lifetime opportunity and that we would inevitably end up living a secluded life together because of the discrimination that I faced. Except in the real world, that kind of relationship is a recipe for abuse and I’m glad I grew out of it.

The Shape of Water could so easily be a different kind of horror film about the dangers of social denial of the sexuality of disabled people and how that makes them easy targets for abusers. Instead, it does exactly that story but ignores the inherent dangers of becoming infatuated with the first man who pays you any attention because the world has spent decades telling you that you are undesirable. It takes what should be a cautionary tale and turns it into a bittersweet romance. In so doing it absolves the bigoted world that rejected Elisa and ends on the message that if the world doesn’t work for you, even if it’s clearly the result of discrimination that the best option is to leave.

At least in both versions of The Little Mermaid, the mermaid was clearly trying to move from one society to another. Elisa gives that up for a completely uncertain future. As Elsa Sjunneson-Henry points out in the title of her own review of the film “I want to be where the people are”.

Disabled people don’t need more pseudo-romantic movies that romanticize our otherness, that connect us so clearly to monsters. That say if society doesn’t accept you that you might as well embrace the monster that they see in you and join literal monsters in a life away from humanity.

 

 

 

 

 

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.

Let’s Contextualize the Suspension of that University of Guelph Prof who Bullied a Disabled Student

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Image Description: A monochrome image of a graduation cap

Yesterday, a story came out about a University of Guelph professor who had openly mocked a disabled student during lecture. This resulted in the targeted student leaving the room along with his aide. Many of his classmates followed suit. The professor in question has been placed on leave and the incident is being applauded as a victory for justice.

While the actions of the professor were abhorrent and he deserves to have been suspended, there is a lot of context that this story is leaving out in favour of celebrating the nondisabled students who walked out in solidarity with their classmate.

I wrote a twitter thread on this yesterday but based on some of the responses I got from it, I think that a full blog post is necessary.

This is only a news story because of the solidarity of nondisabled students. I wish nondisabled people understood how much power they have to improve or limit the lives of disabled people.

The story itself treats the abused student as a prop. They are not named and are never interviewed. The entire narrative is framed around the recollections of nondisabled people.

The sentiments expressed are generally positive and supportive but the issue is also clearly framed as a one off. One bad professor. The students imply they will stand against any other injustice. But will you?

More importantly, do you? The thing that makes the Guelph story unique isn’t that it happened. The more shocking thing is that it happened in public. Disabled students experience discrimination from professors regularly. I am willing to bet that professors refuse to accommodate disabled students daily. It just happens behind closed doors and they tend to use less inflammatory language.

Some professors write op-eds and publish academic articles advocating exactly that. Where were the mass walkouts in solidarity then?

Solidarity in the Guelph incident is positive but it’s important to put it in context. The stakes for protesting students were low. The professor was a sub. Students were risking walking out on a single lecture not the entire course for the semester. They were not challenging the actual course director who has control over their grades.

Would they have walked out if it had been the course director?

Would they have been willing to potentially sacrifice an entire credit?

As responses to my twitter thread have shown me, the professor in question is not popular. I’ve received several responses from his former pupils that are all along the lines of,

“Oh, I had him as a prof and he’s a massive douche”

That reinforces the idea that people who see this story interpret it as an isolated incident perpetrated by someone widely considered detestable. There is no consideration of whether his behaviour fits into a system of discrimination against disabled people in academia.

It is more comfortable to see his behaviour as wholly aberrant instead of understanding that the only thing surprising about it is that he did it so publicly. There are many more faculty members slowly tearing down disabled students in the safety of their offices.

Where is the protest over that?

The Guelph incident is tragic not just for the abuse that one student suffered but because the way it has been framed in the media allows people to believe such incidents are rare and that they are inevitably met with swift and effective push back when they do.

 

How to support my work
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.

Katimavik Completely Changed My Life for the Better but I have Misgivings about it Coming Back

OLYMPUS DIGITAL CAMERA

Image Description: A photo of nineteen year old me crouching in a refrigerator that has had all the shelves removed. I had short bleach blond hair and am wearing a white hoodie featuring characters from Charles Schultz’ Peanuts comic.

 

When I was 18, I was diagnosed as being autistic. I finally had an explanation for all the social misunderstanding and interpersonal faux pas I’d experienced. I now knew that every time I was punished for some mysterious crime with the all too frequent admonishment ‘It’s not what you said, it’s how you said it” were not my fault. All those hours spent relegated to my bedroom wracking my brain to try and figure out why I was even in trouble suddenly made sense. Diagnosis for me was freeing. It was, however, still a diagnosis which said that I was medically predisposed to be terrible at navigating social situations, particularly in new environments with people I didn’t know.

So, obviously three months later I got on a plane to BC with the full knowledge and intention of moving into a house with eleven strangers.

I did this through a government-funded program called Katimavik which took Canadian or permanent resident youths (between 17-21) from all over Canada and divided them into groups of 11 and over the course of nine months placed them in three communities throughout Canada with a different project leader in each location. The intention was for us to do full-time volunteer work, establish strong links to volunteerism and engage with the varied culture of Canada by immersing ourselves in the communities in which we lived.

It was without question one of the most important experiences of my life. I can say without doubt that I would not be the person I am today without having done it or having known my housemates.

Nearly 12 years later though, I am conflicted about my experiences in Katimavik because I almost didn’t qualify to participate and because I know many more disabled people were denied access to that opportunity.

I have sat quietly with my discomfort over the fact that I was privileged enough to be considered “not disabled enough” to not be deemed ineligible. I was able to do this largely because not long after I left the program, the Conservative government defunded it. First rolling back funding so that it was a ghost of what it had once been and then ultimately shutting it down altogether.

The Conservative government is no more though and the Liberal government led by Justin Trudeau (who was a staunch supporter of Katimavik in his pre-politics days) has reinstated the funding.

Katimavik was originally conceived of in the 1970s. It’s 2018 and I fear the discrimination that was built into the original program with remain in its rebirth.

This is significant not only for the injustice of denying disabled youths the chance at this kind of formative experience but because of the opportunities it leads to.

Prior to Katimavik, I was completely unemployable. I spent the first year after high school futily looking for a job to pay for university. I didn’t find one. I mostly spent the year playing housekeeper for my grandmother. She did pay me but was also clearly more interested in having company. So I did very little work as she constantly derailed my attempts to clean with conversation. I maybe worked 1 hour in every 5 spent at her house. I was only paid for what I worked. I made almost no money.

After Katimavik, with a resume that had been boosted by the volunteer work that I had put in at an elementary school, an employment centre, and a publicly run internet café (many people in the area didn’t have access to computers much less the internet) I found work (of the retail variety) relatively easily.

Katimavik gave me the skills and work history necessary to do that. My physically disabled, undiagnosed autistic self was otherwise just utterly unemployable. This is a reality for far too many disabled people.

One of the great perks of Katimavik is that if you get in, you are guaranteed work throughout the program. It’s just unfortunate that the program aggressively screens out disabled people. I almost didn’t make it in.

They successfully hid behind the fact that the houses were inaccessible as were many of the work placements. An argument that I suspect was helped by the fact that so much of the infrastructure for the program was conceived of and implemented well before the Charter of Rights and Freedoms was added to the constitution.

Will that argument still get made in 2018? When they have the chance to start from scratch?

Part of qualifying for Katimavik hinged on passing a medical inspection. You had to get a doctor to fill out a long and detailed form that was then reviewed by the program itself.

It had questions like:

Do you (the doctor) have any reason to believe this person would have difficulty participating in physical activity?

Does the patient have any disabling conditions? Please describe limitations.

Anyone who used a wheelchair was immediately screened out. My cerebral palsy threw them and they assumed that my doctor must be lying or misrepresenting my physical capabilities. So I had to answer clarifying questions like:

Can you walk? (apparently, by not expressly saying that I could, they assumed that I couldn’t)

Can you run?

Can you swim? (I can, but it seems irrelevant because the nondisabled participants weren’t asked to confirm this and at least one of my nondisabled housemates couldn’t)

These types of questions do two things. They show that people will always assume inability from disabled people if the ability isn’t clearly stated even if other questions directly asking about physical limitations are also answered in ways that indicate ability. It also forced me to confirm that “I wasn’t that kind of disabled”.

As it was, my autism diagnosis came after I had jumped through those hoops so had again had to prove that I could participate. This time by acquiring a letter from the diagnosing psychiatrist saying that I was safe to be around children. A concern that didn’t exist prediagnosis.

I went through all of those indignities and I can’t claim that I didn’t know other disabled people weren’t making the cut. I had read a news story (that I, unfortunately, can’t find anymore) about a wheelchair user who tried and failed to force the program into accepting him.

I knew, that the program excluded other disabled people. I knew that but I went anyway. I went anyway and I reaped the benefits of the experience both at work and in the relationships I created with the people I met.

I absolutely would not be who I am now if I hadn’t. I probably wouldn’t be here feeling discomfort at the benefits of being not disabled enough to exclude.

I am uncomfortable though and Katimavik is back so that discomfort matters. It matters because I know what I got out of the program. I know I wouldn’t have a Masters degree. I wouldn’t be a PhD student.

Disabled people need access to coming of age experiences. Not just the work experience. The lived experience of navigating cohabitation with too many strangers in too small of a house. The experiences of misunderstandings and fights and learning to create boundaries.

Katimavik has always been fundamentally about creating a quintessential Canadian experience and by actively excluding disabled people, it reinforces how not apart of Canada we are unless we fit a narrow standard of “able-bodied enough” and a willingness to leave other disabled people behind.

It’s 2018 and I hope the new Katimavik does better but honestly, I’m not holding my breath.

 

 

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Why I Dislike the ISA and Why I Think it has Failed

International symbol of access

I hate the International Symbol of Access (ISA). That symbol that is intended to indicate spaces built to accommodate disabled people. It has however fundamentally failed to promote the accessibility that it meant to signify. If anything it has fostered misunderstandings both outside of and within the disability community. The symbol is tellingly often referred to as “The Wheelchair Symbol” and that is unfortunately what far too many people–disabled people included–seem to think it refers to, wheelchair users.

The ISA was and is intended to be generic in reference. It is supposed to be a symbol of access for disabled people. It is not supposed to prioritize or define which needs are accommodated. It is as much for me, an ambulatory part-time mobility aid (a bioness L300 or an AFO) using person or any other embodiment of disability as it is for wheelchair users. Unfortunately, people often look at that image as a guide for who it is intended to benefit. People think the symbol is prescriptive and thus privilege wheelchair users not only in who they consider when they determine what accessibility looks like but also in who they think gets to claim the symbol as representative of themselves.

Nonwheelchair using disabled people absolutely experience discrimination because cultural understandings of disability tend to at the very least require some visible marker of disability of which a wheelchair is often the most recognizable. People who require accessible services but don’t match that cultural image experience judgement and cruelty. People feel righteous and justified in their discriminatory behaviour. They think they are protecting “the truly disabled”.

More recently the ISA has found itself at the centre of a debate about disability representation online. The ISA is the only clearly disability specific emoji available in an ever-expanding selection.

With the latest apple update in emoji again left out any emojis for disability leaving people wondering why there are a plethora of emojis for mystical creatures but the only emoji available to encompass all disability is the ISA. There are no real wheelchair using emoji much less cane using emoji or BiPAP using emoji or really anything that represents the diversity of the disabled experience.

Some outsiders have suggested that we should rely on those mythical creatures that abound in the emoji catalogue to create the nuance that the ISA lacks

We ought apparently resign ourselves to metaphors. Metaphors that also carry the baggage of monstrosity and fear.

Zombies are a scourge that as they shamble along to threaten the dominant parts of society.

Merfolk may have been sanitized by Disney but they were once fearful creatures who lured sailing men to their deaths.

The debate gets worse when disabled people buy into it and suggest that nonwheelchair using people should be further alienated from the ISA by suggesting that it really is only for wheelchair users and that its use by others could be offensive.

The very act of asking this question is problematic and feeds the broader cultural belief that the ISA really does just mean wheelchair users. And as we have no viable alternative, that narrative further marginalizes and delegitimizes the people who are very much disabled but don’t look like what people expect a disabled person to look like.

Attempts have been made to update the ISA. The most enduring of which is simply an updated version of the original.

 

updated access symbol.png

Image Description: Updated accessibility symbol. A white silhouette of an active wheelchair using stick figure

 

It maintains the same issues as its predecessor. Its primary appeal is that it is a less passive image but it still tries to encompass disability with the wheelchair so it is just as misleading.

There are of course more specific access symbols such as symbols which indicate the availability of braille, sign language interpretation or closed captioning.

I have seen some suggest that the current ISA should be replaced with a tableaux of all of the accessibility symbols but this too falls short. They still leave people out and might give nondisabled people the false idea that they have a more complete understanding of what disability is or at least which disabilities count.

The primary problem is that people do not understand what disability looks like and by extension that accessibility needs extend beyond the needs of wheelchair users.

I tend to be a bit jaded in my ability to have faith in the ability of nondisabled people to clue into the reality that they have been comfortably ignoring forever, so I used to believe that we really needed to find that magical symbol that would spell it out for them.

As a result, when a guest speaker in one of my graduate classes suggested replacing the ISA with a more generic symbol of an A to symbolize access I initially balked at the idea. I have since come around to either an A or at least something as vague.

I have come to realize that not only is the existence of an all encompassing symbol impossible. Looking for one just caters to the blissful ignorance of the people who use the ISA to justify defining who deserves access.

It’s time to force them to take responsibility for their ignorance and hopefully learn something in the process.

That is not to say that more specific symbols don’t have their place. It will always be helpful in informing people what specific services and accommodations are available but it would be helpful if people outside of the individuals those symbols benefit were aware that they do not encompass the entirety of access needs.

Embracing vagueness in an update of the ISA forces people to ask questions about why the change happened and reconsider what it means to be disabled and what that looks like. It might also make people wonder why the only thing we’ve had to represent to totality of disability for decades is that stick figure in a wheelchair.

 

 

How to support my work
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.