Disability as Punishment in Dirk Gently’s Holistic Detective Agency

This post contains spoilers for Dirk Gently’s Holistic Detective Agency.

I recently finished watching Dirk Gently’s Holistic Detective Agency on Netflix. It’s a show based on books by Douglas Adams (who also wrote The Hitch Hiker’s Guide to the Galaxy). The premise of the show really defies coherent summary. You have to watch all eight of the episodes to actually figure out what is going on. Which is in no small way, part of the appeal. I won’t try to explain the plot and this post really won’t spoil much of the plot. I am instead going to focus on how disability fits into the story and character development of two of the show’s characters.

The show largely follows Todd Brotzman who is mostly unwillingly swept up into the drama of the show. Todd is an underemployed (and eventually unemployed) loser. Despite this, he is the primary financial caregiver of his sister, Amanda who has a condition called Pararibulitis. This fictional disorder results in Amanda having vivid hallucinations of being in extreme pain. She hallucinates both a drowning and being on fire. The medications for Pararibulitis are expensive and Todd is Amanda’s only source of financial support as the disease has left her unable to work and primarily confined to her home. It is revealed early on that Todd is financially responsible for Amanda because their parents spent all their money on Pararibulitis (which runs in their family) treatments for Todd.

It is later revealed that an unscrupulous Todd has lied about having the condition to extort money from his parents. He supports his sister out of guilt because their parents’ money had run out by the time she manifested the disease and really needed the treatments.

Throughout the show, Todd goes through a lot of personal growth which includes coming clean about his lies and confronting his other less than legal behaviour (including theft from friends and his landlord).

It seems that by the end of the current season Todd is on his way to redemption by taking responsibility for his past. That is until the very end of the last episode which shows Todd talking on the phone with Amanda (who is still coming to terms with his betrayal), suddenly he drops the phone as he experiences a hallucination of his phone burning a hole through his hand. The last shot is of him writhing on the floor in pain.

Much of the show’s plot revolves around the idea of interconnectedness. The show’s titular character Dirk Gently is a pseudopsychic entity who succeeds mainly through happenstance. Things are predestined. Everything basically happens for a reason.

So, when Todd presumably manifests Pararibulitis at the end of the season, it is clearly meant to.

As soon as it became apparent that Todd had manifested Pararibulitis, I was frustrated at the use of disability as punishment. A punishment that was confirmed as the song First Things First by Neon Trees played in the background. The opening lyrics to which are,

You are never gonna get
Everything you want in this world
First things first
Get what you deserve

The disability as being somehow deserved trope is particularly disgusting because it is so prevalent outside of fiction.

The idea that disability is the result of sin is ancient and continues to be prevalent. Whether it be seen as a direct punishment for an individuals actions or a more generalized reminder of the sins of humanity.

Consider the stigma around HIV & AIDs. A lot of it stems from homophobia and the idea that people who contract the disease deserve it for their perceived sexual indiscretions.

Disability as just punishment is an idea so pervasive, that when it happens to people who have done genuine harm, it is framed as righteous. Consider Ava Duvernay’s Martin Luther King Jr. biopic Selma. At the end of the film while While King gives his speech at the Alabama Capitol, the camera revisits key historical figures in the film as an epilogue.

Amongst stories of activists who were finally able to register to vote or who eventually went on to win places in public office, they include an update on Alabama’s Governor. A man who fought hard against civil rights. This is what they shared.

george-wallace-1

Image description: A screenshot from the film Selma showing Alabama governor George Wallace (portrayed by actor Tim Roth). To his right is text that reads “George Wallace: Ran for President unsuccessfully four times. He was left paralyzed by an assassination attempt in 1972”

The choice to include disability along with his failure to move his political career forward after the events of Selma is clearly meant to show that he got his deserved comeuppance for his racist policies.

While Wallace was absolutely on the wrong side of history and did immeasurable harm with his racist policies and legislation, it is inappropriate to suggest that he deserved disability. Not because he didn’t deserve to be held accountable for his actions but because if we accept that disability is a just punishment then we must accept that disability is universally a negative experience.

Not only does the suggestion that Wallace got what he deserved reinforce the idea that disability is a punishment but it reinforces the idea that disability is and should be a negative experience.

As disabled people fight through deeply held cultural misconceptions about disability, it is harmful to have it suggested in either lighthearted comedies (Dirk Gently) or in reference to real people (Wallace) that those who do harm should suffer and that suffering should look like us.

Believing disability to be a punishment allows people to justify not supporting necessary services and accessibility.

Media needs to do better, even when it’s as surreal and unrealistic as Dik Gently’s Holistic Detective Agency because making it acceptable to say “What goes around comes around” in terms of disability is far from fictional. It’s probable the most realistic thing in that show and that’s a problem.

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The Problem With Paternalizing Disabled People to Protest Donald Trump

More than a week after the 2016 US election many people are still in shock at the result. People are still trying to piece together how Donald trump won and at the same time voice their horror at his election. This is entirely understandable considering the bigotry that was the backbone of Trump’s campaign which included suggesting that undocumented Mexican immigrants were rapists and that the US should build a wall on the Mexican border & the suggestion that the US should implement a total shutdown of Muslim immigration into the country.

Criticisms of Trump and his use of this sort of rhetoric absolutely should be criticized and protested. Particularly because these things could be acted upon and be used to harm the people being targeted.

I however genuinely wish that I could stop seeing things like this

15111106_10154510449195733_7100512809205767734_o

image description: A screenshot of a tweet by Damien Owens including an image of Donald Trump physically mocking disabled reporter Serge Kovaleski with the text “As long as I live, I will never understand how this alone wasn’t the end of it” (link to original tweet)

This tweet has been retweeted over 100 000 times and I originally can across it when the screenshot was shared on Facebook. This incident is considered by many to be Trump’s worst moment of the campaign.

Things like this make me feel sick and it’s not even the fact that I am repeatedly forced to see that image of Trump (horrific as it is). It infuriates me because it comes not from an understanding of what a Trump presidency will actually mean for disabled people in the United States but from pure paternalism.

Trump mocking Kovaleski is undeniably ableist. It is awful & worthy of criticism and commentary but it is far from the worst thing Trump said or did during his campaign and quite frankly the obsession with putting it forward as the quintessential example of how horrible Trump is, is deeply hypocritical.

First, let’s remember why Trump was mocking Kovaleski in the first place. He was angry that Kovaleski pushed back against Trump’s exaggerated interpretation of an article that Kovaleski had written about reports that Muslims were seen celebrating on 9/11.

The mockery of Kovaleski completely overshadowed the fact that Trump was in fact trying to fan the flames of Islamophobia at the time. He was doing that because he had already called for a registry of Muslims. First question, why wasn’t declaring a registry for an entire religious group not big enough of a horror to be the last straw? Second question, why is the mocking of an individual (even if that mockery is grounded in bigotry) worse than the Islamophobia Trump was defending and the actual suggestion of registering Muslims,  an action that if taken would hurt millions?

Mocking Kovaleski was bad but it wasn’t a suggestion of action against disabled people, even Trump knew enough to deny that he was mocking Kovaleski’s disability. He knew better than to double down on that. An awareness that he did not extend to the other groups that he targeted and included suggestions on how he might actually hurt them like mass deportations and building a wall.

That is not to say that Trump’s policies are good for disabled people, they’re not. He’s threatening the Affordable Care Act (ACA) and disabled people are very worried about what a Trump presidency will mean for them. However, simply holding up Trump’s mockery of Serge Kovaleski doesn’t help them. It doesn’t acknowledge how gutting the Affordable Care Act will hurt disabled people. It does not show Trump’s track record of dealing with disability issues (like that his properties have been sued at least 8 times for ADA violations).

It does not come with an active call of solidarity for disabled people with demands for greater access and ACA protection or plans on how to help disabled people when Trump implements harmful laws.

It doesn’t do those things because it isn’t actually based in the idea that disabled people are fully human. It’s based in the idea that disabled people are perpetual children who require coddling and protection. We are not people to be worked with but to be heroically saved.

This kind of focus also ignores the double standard of lambasting Trump for his ableism but ignoring the ableism used against the Trump campaign.

Apparently, Trump mocking Serge Kovaleski is beyond the pale but the widespread and concerted efforts to label Trump with a hypothetical mental illness were righteous and in no way totally stigmatizing of people with psychiatric disabilities.

Right Wing pundit Ann Coulter defended Trump by claiming he wasn’t mocking Kovaleski’s specific disability but was rather “he was just doing an impression of a ‘standard retard'”. As much as I hate to agree with Coulter in any way, particularly when she’s doing her level best to normalize slurs against people with intellectual disabilities, she may well be right. It is all to common to attempt to discredit someone by suggesting they are like someone with an intellectual disability. Trump was even the target of such associations.

During the campaign I came across images like this,

trump-sloth

Image description: A side by side image labeled “The Goonies Now” it shows then and now photos of the cast of the 1985 film The Goonies until the final comparison which shows a picture of the character Sloth who has an intellectual disability and facial disfigurement, it is shown next to a photoshopped image of Trump who has been changed to feature the same disfigurement.

Associating people with disability, particularly intellectual disability to discredit them is very common but the hypocrisy of focusing on the Kovaleski incident goes beyond that. It completely ignores the social reality of being disabled and that those realities were created or maintained by both political parties and extend beyond the borders of the United States.

Consider the fact that as soon as it became clear that Trump was going to win; a post that I had written back in April on disability and immigration to Canada started getting a lot of traffic. It actually maintained the top viewed item spot on my blog for over a week.  If you don’t have time to read it it boils down to: if you’re disabled you can’t immigrate to Canada unless you marry a Canadian.

The British government is currently under fire from the UN for violating the rights of disabled people with austerity measures. The government has more or less dismissed these concerns.

Socially on an international level it is entirely acceptable to treat disabled people like second class citizens. None of this reality is addressed by focusing on that one time Trump mocked a single disabled person. Lambasting just the mockery suggests that the world is supposed to be above treating disabled people badly but the lived experience of disabled people does not bear this out.

By simply suggesting the world should be above mocking disabled people without contextualizing it with the harms of ableist actions and policies, people are in fact covering up the fact that those things are widespread realities.

If the concern was a genuine concern for disabled people then the question wouldn’t be “why didn’t Trump’s mocking of a disabled person stop his campaign in its tracks?” but rather “Why didn’t ads like this one for Hillary Clinton which affirms the humanity of disabled people and the importance of inclusion guarantee her the presidency?”

The reality is that people are all to permissive of policies and laws that discriminate against disabled people regardless of political affiliation and fixing those problems or even acknowledging their scope is harder than calling Trump out for a single incidence of ableism.

Can We Talk About that Paralympics Ad?

British Broadcaster Channel 4 (which has the broadcasting rights for the 2016 Paralympics in Rio) recently released their trailer for the games and it’s getting a lot of positive attention.

Here it is

Here’s a version audio described by Australian comedian Adam Hills

I’ve actually been trying to write this piece for several days and have been having difficulty. Not because I don’t know how I feel about this ad but because I don’t know how to articulate it. I’m still not sure that I do. I have found that when I criticize the media representation of disabled people. I am often accused of criticizing the disabled people in that media.

I want to make it clear that this is not what I’m trying to do. I am trying to talk about the implications of how disabled people and their accomplishments are framed and disseminated for a majority nondisabled audience.

I want to like this ad. It has so much that I love. It has an almost entirely disabled cast and so many of them are doing bad ass things to appropriately themed music. If that was all this was, I would probably be sharing it all over social media to the point of annoying everyone connected to me.

There are two things about this ad that just end up making me cringe. The use of the term Superhumans to refer to Paralympians and the song “Yes, I Can”.

The term Superhumans is not new to the Paralympics. The commercial that Channel 4 used for the 2012 London Paralympics is called “Meet the Superhumans”

You can see it here,

There was no audio described version of this ad. Which I guess speaks to a degree of progress in this year’s advertising and general disability awareness.

So why do I dislike the fact that the Paralympians have been labeled Superhumans? It’s not because I don’t think they are phenomenal athletes. They absolutely are. In a way calling them Superhuman detracts from that fact.

It’s ironic how closely the term Superhuman is to the term Super crip.

Super crip is a term used by disability media critics to describe the phenomenon of celebrating disabled people in either a way that lacks meaningful context or in a way that seeks to effectively erase their disabilities except to add emphasis to the extraordinariness of their accomplishments. It’s not just that they’re amazing athletes. It adds a degree of “Can you believe someone like that could do this?”

The 2012 ad is particularly guilty of this with its juxtaposition of scenes signifying how people became disabled (often violently) with images of them succeeding as athletes.

It does from A to B without looking at any of the context of how people get to B or for that matter who CAN get to B. Because athletic success, particularly for disabled people is not just a matter of having the desire to do it.

Which brings me to the repeated refrain of “Yes, I can” from the 2016 ad, which buys fully into the “to believe is to achieve” stereotype. It is not just a group of musicians, dancers, and athletes showcasing their skills. They really sell the myth.

Consider the scene in the career counselor’s office where the counselor tells a wheelchair user “No, you can’t” which is immediately followed but by that young man playing wheelchair rugby while screaming “YES, I CAN”.

The thing is “No, you can’t” is far more than just the words of an individual who has vastly underestimated your potential. It is a systemic reality. It is far more accurately an expression of “No, you can’t because we won’t let you”. Wheelchair Rugby Clubs do do not appear fully formed just because someone has the desire to play.

Getting to be a Channel 4 “Superhuman” is in many ways as much about luck as it is about skill and hard work. The reality is that access to athletic training for disabled people is limited to those who have physical and financial access to it. If there is no training available in your area or even if there is but you can’t afford it, all the desire and willingness to work in the world is not going to get you to the Paralympics.

In many ways the oversimplification of “yes, I can” actually undermines the extent to an athlete’s success. It ignore the work they put in not only training but also in getting access to that training.

It also erases anyone who doesn’t have access to that training because as I mentioned it’s selling “to believe is to achieve” hard.

The video also delves pretty deeply into inspiration porn territory with it’s images of disabled people doing everyday things. Like looking after children or brushing their teeth. Considering that disabled parents still face the threat of losing their children solely because they are disabled and not from any identified inability to provide care, including Canadian Paralympian Charles Wilton. Wilton did eventually get to keep his son but that doesn’t erase the fact that it was considered acceptable to plan to remove the child before he was even born or before actually assessing it his parents could care for him.

The erasure of systemic barriers in favour of an “overcoming” disability narrative is  misleading. It not only erases the reality of succeeding as a disabled athlete–the need for specialized adapted training and coaches who are willing to work to make those changes–but it also erases the people who don’t have access to those things and completely ignores the reasons why.

It is a disservice to the real work put in by Paralympians whose work and not just successes deserve to be celebrated.

It also promotes social complacency by putting all of the onus for success on disabled people and letting nondisabled people of the hook for the perpetuation of an inaccessible world that actively limits rather than supports our success.

I want to see more bad ass disabled people doing bad ass things but I want those stories to contain context which holds society accountable for why there aren’t more bad ass disabled people being allowed to do bad ass things.

Could You Please Stop Insisting that People Have to Use Person First Language

There are so many of those lists explaining how to speak to disabled people respectfully. They are generally well intentioned and some of them are even really good. There is however an almost universal element that I wish would be retired. They inevitably include a statement that disabled people should ALWAYS be referred to using Person First Language (see an example here).

I have issues with the command to always use Person First Language for two reasons.

1. Person First Language is culturally geographic. It is only consider PC in North America. Interestingly if you were to read the same article in English speaking Europe they would insist that you say “disabled person”.
2. Despite it being widely considered PC in North America, a growing number of disabled people (myself included, see here and here) are intentionally abandoning it.

This isn’t about completely switching the script. I’m not suggesting that we ban Person First Language or that people shouldn’t use it (so don’t attack me in the comments). I’m saying that realistically person first language is not always appropriate (from a purely cultural sensitivity angle) and demanding that it be used anyway is a tad clueless.

The insistence  that people MUST use People First Language is also just disrespectful, not only to how many people are coming to self-identify but also completely ignoring that the reasons that we do so might actually be valid. Ignoring the voices and preferences of actual disabled people just reinforces the idea that we are incapable of determining what is best for us.

Whenever I come across the Person First edict on a “How to Be Respectful about”. Disability” list. I always wish it had been replaced with something along the lines of,

How to Deal with Disability Labels

Language around disability is complicated and there is currently no universally accepted term. Even the terms that are considered most acceptable like people with disabilities (in North America) and disabled people (in the UK) are not universally accepted by people in those locations. In order to be respectful it is usually inoffensive to default to the most acceptable term based on your location. However, if a person expresses an alternate preference, it is extremely rude and disrespectful to insist that they conform to the dominant preference. Best practice would be to utilize the term that the individual prefers.

I repeat. It is extremely rude and disrespectful to impose labels on people who have clearly expressed an alternate preference.

I wish this concept wasn’t so hard to understand.

 

 

But it Wasn’t Designed for You: How Ignoring Accessibility Becomes the Excuse for Perpetuating Inaccessibility

I am sick of seeing people responding to evidence of inaccessibility with “but it wasn’t designed for you”. This argument has been used to both try and shut down calls to make inaccessible things more accessible (which is what I’ll be focusing on) and to limit access to accessible things that have been deemed unnecessary to nondisabled people (see my piece of accessibility to fresh food here for an example of that).

So the much anticipated augmented reality game Pokemon Go was released in several countries last week (though not Canada yet). It is already wildly popular and has had a noticeable impact on Nintendo stock prices.

The game–which is based on one originally released for Gameboy and which also had a television series and card game–allows smartphone users to find and catch pokemon in the real world.

Since it’s release it has been criticized for being inaccessible to many people with disabilities. The game requires that players actually be able to get around public spaces to find the pokemon and visit pokestops (which provide players with necessary items for the game) and train at gyms.

For people with limited mobility or who have difficulty leaving their homes. The game is entirely inaccessible because movement is completely tied to an individual’s GPS location.

I am going to spend less time talking about the accessibility issues of Pokemon Go itself because others are already doing that better than I could. I am instead going to use the game and people’s reactions to having its inaccessibility highlighted as a timely way of addressing how people’s  reactions to inaccessibility being called out end up justifying and perpetuating that inaccessibility.

When a new product is called out for being inaccessible or when disabled people advocate that a company make an inaccessible product more accessible, two related arguments inevitably come up.

  1. This game wasn’t made with you in mind.
  2. You are not the target demographic.

On the face of it these arguments seem identical but there are some key differences. In the first case, the exclusion may just be an oversight but it is one that will be justified as an understandable lapse.

The demographic argument works best when a product is made with a specific demographic market in mind.

The problem is that with the first argument it is far to acceptable to brush off inaccessibility as “oh well, I guess this one thing just isn’t for you” despite the fact that it is very far from being “just one thing” and is in fact representative of a widespread problem. It is far to common and easy to ignore whether a product or service is inaccessible.

In order to head off reactionary comments, I am not arguing or suggesting that everything can or should be made accessible for two reasons.

  1. Accessibility is not and never will be a one size fits all phenomenon.
  2. There are just some things that people with certain disabilities shouldn’t do for reasons of safety. For example, I have a weak arm and should for my own safety and the safety of others never operate a chainsaw. So I’m not going to go after chainsaw manufacturers to their products because I shouldn’t.

So please don’t send me a rant about how [insert random unrelated product or service] is either essential but still inaccessible or which regardless of redesign cannot be made safely accessible.

When disabled people point out accessibility issues it is usually because a.) they think with some tweaking the thing itself could be made accessible or b.) they are expressing a consumer desire to have someone redesign an inaccessible thing to be accessible. It is not a wholesale attack on all things.

So continuing on I am now going to address the “they just didn’t have you in mind” argument. There are way to many things that just happen to be inaccessible because the creators either didn’t consider disabled people or determined that accommodating the would be to time consuming. Far to many of these products (Pokemon Go included) could be made accessible or have accessibility mods added on if the creators cared to put the effort in.

The fact that far to many don’t is where this argument of “oh they just didn’t make it for you” really falls apart. Almost nothing that is available to the general public is made with disabled people in mind. We are far to frequently relegated to the realm of “niche target market” catered to primarily by medical companies or adaptive technology companies.

This leaves us out of far to many mainstream pass times. This is where it stops being an oversight and becomes a problem where out exclusion and reliance on only specialized targeted products and indicative of systemic and socially acceptable exclusion.

As a target demographic we are also treated differently, with products geared towards us specifically only made available in specialty stores.

In terms of a more mainstream understanding of target demographic, we are still separate because generally target demographics are based on goals and an understanding of who will be interested in a product. Not actually mandating who can use it.

People use products not expressly geared toward them all the time without consequences. The problem comes not from who a product is targeted at but at who is expressly excluded from using it.*

But back to Pokemon Go. Where does it fit into all this? The game itself  has a very broad demographic target. It is as much as any single product can be geared to everyone.** This is what makes the complete lack of consideration of disability so frustrating because it is a case of “this is actually for everyone except you”.

The sheer scale of the game’s popularity only emphasizes this fact.

So, I would ask that any person who reacts dismissively to calls for more accessibility (whether it is in Pokemon Go or anything else) to ask themselves

Why is this request making me so uncomfortable?

I would then ask you to express solidarity, to show companies that you actually are comfortable sharing space (and pokemon) with disabled people. Tell companies that disabled people deserve accessible products and don’t deserve to be forgotten or an afterthought.

 

 

*I am aware and do not wish to minimize the fact that there are certain industries which don’t expressly forbid people from outside their target demographics do create cultures within those industries which are very unwelcoming and often abusive to people who are seen as outsiders.

**It is also important to note that disabled people are not the only group criticizing the game’s inclusivity (see here for another example).

Mentioning Disability is not an Invitation for Commentary or an Inquisition

I think one of the clearest examples that I experience regularly that disability is not an accepted experience is that I can’t casually reference the experience of being disabled without being met with either pity or inappropriate questions. Sometimes it is both.

For me disability is a huge part of how I experience the world. It impacts how I do every day things. If it is relevant I should be able to reference it in the same way a nondisabled person talks about their day.

When I reference my disability or how it impacted an activity (like referencing how I had to do something differently than the norm). I am not looking for pity. But I all too often get it.

Or in a situation where I am airing a grievance based on discrimination, where empathy (though I usually get pity) is appropriate, it is misplaced. People are sorry that I am disabled not that I experienced discrimination or prejudice.

I have written about how nondisabled people often treat disabled people like public spectacles before. Here, I’m going to address how casual acquaintances try to legitimize inappropriate questions about disability.

This isn’t about those people who accost disabled people on the street to ask “what’s wrong with you?”

Rather this is about those people who you are conversing with casually who take the remotest reference to disability to ask “what’s wrong with you?” even when that question is not a natural progression of the disability reference.

These encounters often involve social coercion on the part of the questioner to get you to answer.

The scenario might involve a peer at work or a fellow guest at a party. They are people who can have genuine reasons to speak to you. They will also use the circumstance of being at work or surrounded by other people to force compliance because failure to comply could have consequences.

For example, you are attending a bridal shower for a close friend but it is being hosted by that friend’s future in-laws so the only person you really know is the bride. Everyone else is either a future in-law or one of their close family friends. As often occurs in these situations people ask what you do.

For me this brings disability up basically immediately because I’m a Disability Studies student. It’s a miracle is people don’t immediately move a conversation about what I study to what I am. Usually, telling someone you are a student elicits questions about the program and what you are planning on doing after graduation.

Not so if you are both disabled and a student of disabilities. Somehow, people see to think that asking about my medical history is a perfectly natural progression from me saying that I study disability. It is always quite clear in these conversations that people aren’t just ascertaining whether I have a personal stake in my field. That could be more respectfully determined by asking why I chose disability studies.

A question like that also would allow me to determine what information I am comfortable sharing. Demanding someone’s medical information is about entitlement and voyeurism. Waiting for a disabled person to make even the vaguest reference to disability first does not make it more acceptable.

Making that demand in front of other people is just coercive. Particularly if refusing will put you in a awkward position. Either with the questioner or in keeping with the bridal shower scenario with the bride.

I have found that simply telling people that you don’t want to share that information is rarely received gracefully when the request originated as a demand.

People tend to realize that a refusal is also a message that the question was inappropriate so they feel the need to justify their right to ask it and shame you for noncompliance (remember this is not a private conversation but one that is happening in earshot of other people). So they ask follow-up questions.

You’re doing a PhD in disability studies, shouldn’t you want to educate people about disability?

The answer I wish I could give: Yes, and an integral part of teaching about and advocating for disabled people is making clear boundaries. It does not benefit disabled people to reinforce the idea that our lives and bodies are available for public consumption.

Additionally, as you point out I am doing a PhD in disability studies which means that in addition to my years of experience as a disabled person, I have spent years and tens of thousands of dollars becoming this qualified. University professors don’t work for free so why should I? If you would like to agree to an hourly rate, I’d be happy to share my extensive knowledge with you. Like any work arrangement though I have the right to have my medical privacy respected and I will not be sharing any personal information unless I choose to do so.

I am just trying to learn, why won’t you educate me? Don’t you want people to understand?

The answer I wish I could give: Setting boundaries is a lesson in respect. If you really wanted to learn, you would accept that lesson rather than expecting me to give you personal information which in the grand scheme of things would tell you nothing about the experience of being disabled. It really only serves to parrot information that can be found in a medical textbook or on WebMD.

 

Ultimately as much as I want to, I don’t say those things. More often than not I just give them the information that they want. This invariably leaves me feeling horrible. The consequences for noncompliance however are greater. In the bridal shower scenario it would put my friend in the awkward position of either defending me or defending a future family member or friend. Either alienating me from them or them from family.

These more public confrontations risk more than angering a single person but can have wider consequences from witnesses who are often just as curious as the original questioner. It is usually easier and often safer to comply in the short term and if the questioner is someone that you are likely to have repeated contact with (like a coworker) consider taking action to change the environment in the long term.

I wish these interactions didn’t happen at all. I wish people’s express desire to learn was genuine and not a convenient excuse to justify inappropriate behaviour. So in case you do genuinely want to learn about disability and don’t want to be an asshole in the process here are a few tips.

If you are able, make an effort to educate yourself on your own time. Read blogs by disabled people. Read academic disability literature (some disability studies journals like Disability Studies Quarterly are public access and can be read for free by anyone).

If you are talking to a disabled person, don’t take any vague reference to disability as an invitation to ask probing personal questions. Make sure any follow up questions are directly related to the person’s original reference.

Let the disabled person decide how much they are willing to share and respect their privacy and boundaries.

Recognize that diagnosis information often says very little about the actual lived experience of disability and should not be considered essential to learning about it.

Problems with the Disability Tax Credit Run Deeper than it Being Non-Refundable

On Friday CTV News ran a story titled  Six in 10 Adults with Disabilities can’t Benefit from Disability Tax Credit. The main focus of the piece is on the fact that the credit is non-refundable. This means that in order to benefit from it the recipient actually has to make enough money to pay taxes. The problem being that most people who qualify for the credit don’t make enough money. The recommendation they come up with is to make the credit refundable. This way everyone who qualifies gets at least part of the credit regardless of their income.

I would absolutely love for the Disability Tax Credit (DTC) to be refundable as I am part of the 60% who qualify who don’t make enough money to benefit (shameless plug. You can buy me a “coffee” by making a donation here or by clicking the “buy me a coffee” button in the right sidebar). The thing is that problems with the DTC run a lot deeper than whether people who qualify can actually benefit.

Let’s start with the big one. The title referring to 6 out of 10 adults with disabilities is misleading. It’s really 6 out of 10 adults who qualify. This is a huge distinction because the DTC is notoriously difficult to qualify for. The application process seems designed to arbitrarily disqualify people. It is so confusing and the standard so arbitrary that doctors don’t even want to fill it out. Not because they don’t think you qualify but because they worry that if they make an error that you will be refused.

In theory the DTC is designed to “provide for greater tax equity by allowing some relief for disability costs, since these are unavoidable additional expenses that other taxpayers don’t have to face.” (quote from the government of Canada website).

You would think based on that stated intent that qualifying standards would be based on things like:

Having a disability

Having expenses related to that disability

The first of those is true, the second is not and just having a disability regardless of the addition financial burdens it brings is irrelevant. Instead prospective applicants have to wade into an arbitrary level of disability that has very little to do with defining a person’s actual experience of disability. A person’s functioning is broken down into several categories in which you must be markedly restricted in at least one or significantly restricted in at least two (see the application form here. It’s a PDF. here’s a text version).

Markedly and significantly are quite subjective terms. Markedly is at least partially defined. Let’s look at the functioning category for feeding,

Your patient is considered markedly restricted in feeding if, even with appropriate therapy, medication, and devices:
• he or she is unable or takes an inordinate amount of time to feed himself or herself;
and
• this is the case all or substantially all of the time (at least 90% of the time).

Oh hey a new arbitrary and subjective word inordinate. This is confusing enough but the part that really frustrates me is the restrictions on what qualified as feeding “Feeding oneself does not include identifying, finding, shopping for, or otherwise obtaining food”. So shopping for food doesn’t count?

So the fact that I either have to take the bus to the grocery store–which seriously limits how much food I can buy at one time based on how much my physically disabled body can carry (people who use accessible transit may be even further limited as many such services limit how many bags a passenger can have) thus necessitating more trips to the store–or pay to have my groceries delivered–which is a cost that the DTC would offset–do not get counted in the “inordinate amount of time” it takes me to feed myself. Even though I’m either out money or additional hours just to have access to food much less to prepare it.

This leads to my second major issue with the DTC. It appears to assume that applicants aren’t independent and that someone (like a parent) will be collecting it. I suspect that this is why the credit is non-refundable. The government assumes that the disabled person is in someone else’s custodial care. Someone who is not disabled and who is making enough money to qualify for tax credits. Someone who will be able to do all the necessary grocery shopping in one go.

Why do I suspect this? Just look at the application form on page 1. The first two sections are “Information about the person with the disability” and “information about the person claiming the disability amount”. There is no box to tick which indicates that they are the same person. Rather the form doubles down with “the person with the disability is:  My spouse or common law partner______ or my Dependent(please specify)______”

I mean, I guess I’m dependent on myself but I don’t think that’s what the form is getting at. I guess if we’re being literal then I also meet the two follow up questions. Why yes, I do live with myself and yes, I do depend on myself for food, shelter, and clothing.

Correct me if I’m wrong but most forms where it might filled out by a qualified applicant or a guardian (think adult passports which are applicable to anyone over 16) usually assume the person is applying for themself. They just tend to have an extra section or box that says something along the lines of “if the applicant is a minor, the parent or guardian must sign here”. It’s clearly separate. The DTC form however, doesn’t even really acknowledge that you might apply yourself. Even though it is completely legal to do so.

My third major issue with the DTC is that it requires you to requalify every five years. So you have to go the pain of convincing a doctor to fill out that ridiculous arbitrary form again.

Now I understand that some disabilities are temporary and that some people don’t qualify on a permanent basis. The way to get around that? add a box for the doctor to indicate if a condition is permanent and have them set out a reasonable timeline to requalify. If the condition is permanent drop the bureaucracy of requalifying and don’t bring it up again until you can show us peer reviewed medical evidence that something can be cured. Otherwise it just appears that the government has decided to take an official stance on believing in miracles. Which is awkward.

So as much as I would love for the DTC to be refundable. In reality for it to work as the government itself claims to intend. There needs to be a complete overhaul of the system. An overhaul that is unlikely because it would acknowledge that far more people should be qualifying and also erase some of the roadblocks to maintaining access to the DTC. All of this would cost far more than the estimate cited in the CTV piece.

The status quo keeps costs down. The government doesn’t want it questioned to deeply.