My Son’s Swim Coach’s Second Cousin’s Wife has a Student With Cerebral Palsy: The Disability Anecdote

The disability anecdote is something that I’m sure most if not all disabled people have faced.

At its most basic it can simply be someone, having discovered they are in the presence of a disabled person who feels compelled to create some bizarre sense of false common ground.

The scenario generally involves a nondisabled person finding out that you have a particular disability.Perhaps as a result of casual conversation but more likely because they have asked an invasive question. One that has very likely been phrased some thing like this,

“I’m sorry. I don’t mean to be rude but what wrong with you/your [insert visible characteristic of disability]”

If the disabled person is cooperative or just doesn’t want to deal with the backlash of refusing to answer and actually obliges the questioner with their diagnosis it is not uncommon for the nondisabled person to then respond with.

“Oh my [insert vague and often several degrees separate aquaintance] with that/some other disability that they perceive to be similar but probably isn’t”

They then look at you expectantly and I for one still have no idea what to do with these interactions. Do people really expect to be congratulated for being able to come up with a single example of another disabled person that they or just as frequently someone they know has encountered at some point?

Are they trying to tell me that I am not alone?

Are they trying to tell me that they are not completely ignorant of disabled people?

If the latter, they are failing just through their approach. Yet, nondisabled people seem to love to share these anecdotes which prove nothing more than how invisible disabled people are to them. Seriously, considering the percentage of the population that is disabled (generally measured around 20%) these anecdotes really just show how far we have to go in terms of visibility and public access.

These instances are troubling but they are also a more benign (on a very malignant spectrum) version of the disability anecdote.

These anecdotes also come up in opposition to disability rights activism. They most often come from nondisabled people but are also offered by disabled people whose disabilities may differ from that of the people doing the advocacy. These anecdotes generally go like this,

Disabled person: “This action/image/policy is particularly harmful to people with X” (often followed by a list of reasons and evidence of that harm)

Nondisabled person/person with different disability: Well I know someone with X and they are perfectly fine with it”

These interactions are infuriating because they are entirely premised on the idea that the opinions of disabled people can be trumped by the mere mention of a possible counter opinion by a different disabled person. This false idea also appears in conflicts that occur between disabled people–“well I’m also disabled and I don’t agree with you so…”–but in those cases, they can be challenged or the detractor can be asked to justify or explain their position. When the hypothetical disabled person (and yes I often doubt they actually exist) is just an anecdote, the argument hinges entirely on the fact that there exists an alternate viewpoint not on whether that viewpoint has merit or can withstand questioning or scrutiny.

The implied rightness of this hypothetical opinion tends to be based entirely on the fact that it continues to allow the maintenance of the status quo. A disabled community asks for change and someone pops up to say that no change is necessary because “they know someone with that disability”.

An absent disabled person whose opinion cannot be challenged or even confirmed and yet is expected to be not only believed and respected but adopted.

It is particularly frustrating when these anecdotes come from parents who use their disabled children as weapons with which to beat disabled adults.

In these cases, I always wonder

Does the child actually think this?

Is the child old enough to think critically about this issue?

Regardless of age, where and from whom is the child learning about disability as a lived experience?

Does the child have access to alternate opinions or is it safe to assume that they may be parroting opinions on disability that they have been presented by their parents and broader social group?

Does that social group include people with disabilities?

I have these questions because as a disabled adult my understanding of disability has changed drastically from what I thought as a child. I fully acknowledge that many of the views I held back then were toxic and built on internalized ableism. I simply did not have the critical thinking skills to do anything but accept the worldview I was offered by the almost exclusively nondisabled people around me.

And yet, disabled children are effective weapons against disabled adults because it is not acceptable to publicly question them. You cannot reasonably ask parents who claim to speak on behalf of their children to produce them for confirmation and clarification.

Even when the anecdotal disabled person is an adult it’s considered inappropriate to question the validity of their argument too closely. This is a direct result of the paternalistic ideas around disability that society holds. You are not supposed to overtly and publicly challenge disabled people even if you yourself are disabled. It is often perceived as an unreasonable attack.

So anecdotal disabled people continue to be an effective weapon against calls for systemic change. They may not be effective at changing the minds of the disabled activists their hypothetical views are used to oppose but they are popular with those who do not want to change. Those people can be comforted that they need take no action. That they need not interrogate the way they think about disability.

I see these anecdotes in all their shades so frequently that I also wonder, how often am I being used as precisely that anecdote (because odds are that I am) and by whom? What views are being attributed to me when I’m just someone’s neighbour’s second cousin’s wife’s former swim student with cerebral palsy/autism?

 

If you liked this post and want to support my continued writing please consider buying me a metaphorical coffee (or two or more). Donations help me keep this blog going and support my ongoing efforts to obtain a PhD.

Buy Me a Coffee at ko-fi.com

Advertisements

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.

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.

Let’s Talk About Disability, Periods, and Alternative Menstrual Products

There is so much I want to say about disability and menstruation. So much that I could never fit it into a single post. I have noticed that there is very little written about disability and menstruation generally and what little there is is most often not written by disabled people. As a result a lot of it is about control and often menstrual cessation in order to make the menstruating person more convenient for a care giver. This sometimes goes so far as sterilization of the disabled person.

The dearth of material on disability and menstruation from the disabled perspective likely has a number of influences that include the fact that menstruation is still unfortunately a taboo subject generally that people are embarrassed to talk about. Add to that the very idea of disability and sexuality is also still (somehow) widely denied. Which is, I suspect why so many nondisabled people feel so comfortable talking about period cessation as a reasonable solution to disabled people who have periods.

This focus on just stopping the whole business of menstruation is frustrating because it primarily marks the disabled body and its natural functions as too inconvenient. It also means that for those of us who do menstruate that we are left with disability specific information on how to deal with our periods.

It is the latter issue that I’m going to deal with now because the first issue while so important is just to big for me to handle right now.

I am going to talk about disability and the accessibility of alternative menstrual products.

Unfortunately, I am just one person with just one kind of disabled body and so nothing I say will have universal application. This is one of the reasons why we really need more disabled people to share their stories and experiences. If you have a different experience please share it in the comments or write your own blog post about it and share that in the comments.

Hopefully in spite of this I will have something useful to say or spark a conversation to get more voices heard because I really feel that it is essential to demystify and destigmatize not only menstruation and particularly disabled people menstruating.

For context (to see if what I say will translate well for you) I have left side hemiplegic cerebral palsy and am autistic. So most of what I have experience with is dealing with menstruation literally single handedly and the sensory aspects it entails.

I started menstruating when I was 11 and have primarily used pads as my go to menstrual  product. I found tampons difficult and uncomfortable for pretty much my entire childhood and teen years. I only started using them rarely when I was well into my twenties.

I have never found pads to be particularly comfortable and couldn’t manage to deal with anything other than the thinnest option. I’m still not a fan of tampons. I find the uncomfortable but sheer pragmatism has forced me to use them occasionally. I am always hyper aware of them the entire time that I do.

In the last decade or so alternatives to the standard and and tampon methods of dealing with menstruation have become more mainstream (though they have definitely existed longer than that).

Alternative period products are generally washable and reusable and are considered to be both more environmentally friendly and more cost effective.

The oldest alternative period product is probably the menstrual cup

Menstrual cup comparison pic

Image description: a comparison of 12 kinds of menstrual cups including variations from the following brands; Juju cup, Diva Cup, Lunette cup, MCUK, Sckoon, Femmycycle, Lily cup (produced by Intimina), and Me Luna (pic credit from Vitals can be found here)

I was told by a menstrual cup user that I would be unable to use menstrual cups because insertion requires two hands (they were referring to the portion of insertion that requires the menstrual cup to be folded small enough for insertion into the vaginal canal). I believed them for years.

A menstrual cup usually costs around $40CDN and can be used for a year or more before requiring replacement (see specific brands for life span as they differ from product to product).

Yet a curiosity ultimately led me to buy a Diva cup last year anyway. I can report that they can in fact be used one handed. They can be folded by bracing the cup against something (like your leg or other arm) and then inserted as per the basic instructions.

I can also report that I find the menstrual cup to be far more comfortable than tampons. I can’t even feel it when it’s inserted. If I can feel it, it’s a good indication that I haven’t done it correctly and should reinsert.

Intimina, the company that manufactures the Lily cup and Lily cup compact recently put out this infographic about the benefits of menstrual cup use

How a Menstrual Cup can change your life

Unfortunately the graphic is so involved it defies an accurate image description. When I brought up this accessibility concern with the company via twitter, they created a more screen reader friendly version of the information which can be found here.

In addition to my Diva Cup, I also have a Lily Cup compact which folds up into a more convenient size to be carried in a pocket or purse (for when I don’t start my period in the comfort of my own home).

As you might have noticed there are a lot of different menstrual cups which might seem overwhelming but this selection is useful because it means that there are options not only in the sizes and lengths of cups available but also in the materials used (which is good to know for people with latex allergies). A more comprehensive guide to the options available a buying the right one for you can be found here.

The other product that I want to talk about is period panties. The kind that have absorbency built right in and are designed to replace pads or at the very least panty liners.

The brand that I have experience with is Thinx. The least accessible thing about these period panties is the cost which ranges from $24-$38USD (damn the abysmal exchange rate) per pair so they are a significant initial investment. I however, love them. They are significantly more comfortable than pads and easier to put on as there is no finicking with packaging or sticky tabs that are as likely to stick to itself as it is to your underwear. Thinx are underwear and are put on and removed like underwear. There are no extra pieces or steps.

The company is careful to not guarantee that you can replace pads with their product. I have however found them to be quite absorbent. I have slept in their boyshort which is advertised for light days on a medium flow day without leaks and woke up still feeling comfortable.

Thinx boyshort

Image description: a white woman stands in Thinx boyshorts underwear and a tank top.

I also appreciate that the boyshorts are gender neutral and Trans inclusive recognizing that it is not just women who have periods.

thinx boyshort gender neutral

Image description: a man stands in Thinx boyshorts in profile. He has a tattoo that says happiness on his side. both images taken from the Thinx website here.

The most onerous thing about period panties is rinsing them out before washing them which does require some hand control. I get around this by putting them on the floor of the shower and pressing the blood out with my feet as I wash my hair and then hanging them to dry until I do laundry.

I only use the boyshort and sport styles and like them both. I also have a couple pairs of the hiphugger style but I only used them once. I find the lace uncomfortable and it gave me a rash (so beware of this if you have sensitive skin). It’s unfortunate because the hiphugger style is the most absorbent. I wish they would make an equally absorbent model without the lace.

If you are interested in trying Thinx you can get $10 off by clicking this link.*

Padkix is another brand that makes period panties but I have not tried them.

Since I started using Thinx and menstrual cups, I have given up using pads and tampons entirely and my periods are more comfortable and less eventful as a result.

I usually start using Thinx a couple days before my period is supposed to start to avoid unexpected public leaks (which are a thing I no longer worry about). I then use Thinx in conjunction with a menstrual cup.

I know that menstrual cups will likely not be widely accessible but I wanted to include them to confirm that they can be used one handed. I think period panties have the potential to be potentially useful to more people if only they weren’t so initially cost prohibitive. Particularly for people who find that pads set off sensory overload.

I hope that people find this helpful. I would also like to ask again that people whose needs differ from mine please share their own experiences either in the comments or in their own blog posts.

 

*This is not a sponsored post. The discount code is available to share for anyone who has previously bought Thinx. I do however get an equal discount for everyone who takes advantage of 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.

No, Your Violence and Lack of Accommodation is Not Our Fault

So, a disabled woman set off the metal detector at an airport. This triggered additional screening. Her mother attempted to inform the TSA agents of her daughter’s needs. They ignored her. The woman became confused and tried to get away from the TSA agents. They tackled her to the ground and left her bloody. She was arrested (though the charges were later dropped.

Not surprisingly, the TSA and police are being sued over this. What I would like to talk about is the TSA’s defense of their actions. They are crying ignorance. Apparently, the woman’s mother telling them that her daughter is disabled and might become confused before the situation escalated was insufficient. They suggest that the woman and disabled people generally should call ahead to inform airport staff that they are disabled.

UM WHAT?

Not only is that not likely to have changed this situation. It is also an absurd burden to place on disabled people. We might as well hire town criers to precede us every where we go, ringing bells and yelling “Hear ye, hear ye, Cripple approaching”.

Now, I know that many disabled people do have to call airports ahead because they require assistance either navigating the airport or boarding the plane. I also know that for every person that I know who requires that assistance that I have heard at least one horror story. Stories that range from having there assistance requests lost (more or less reinforcing the idea that calling ahead was all that was required to avoid the violence exacted on that woman) to being left alone in the “accessibility lounge” for hours while being actively separated from travel companions.

It’s bad enough that systems aren’t in place to accommodate disabled people without advance warning (thus giving people an excuse to fall back on when a space isn’t accessible) but to suggest that we should have to announce our presence in situations we weren’t even expecting to require accommodations is absurd.

Violence against disabled people by law enforcement agencies is hardly rare. It is not just in airports. Should we also call the police non-emergency line every time that we leave our homes and provide them with a detailed itinerary and list of our diagnoses and symptoms? Just in case we have an unexpected interaction with police while we’re out?

I mean law enforcement (the TSA included) is totally equipped to keep track of every disabled person (and their specific needs) they might interact with in a given day; as long as we call ahead right? It’s not like there are very many disabled people or that our needs are particularly varied or complex.

The answer is clearly not to give people in positions of authority (particularly where they have training in responding with force) to be aware of the needs of disabled people. Particularly, in scenarios where there is someone trying to inform them of that fact.

It is not our responsibility to anticipate and stop violence against ourselves. We couldn’t if we tried. It’s a completely unrealistic expectation.

It is far more reasonable to expect people in power to be educated about disability and to listen when they are told that they are dealing with a disabled person and act appropriately.

It should go without saying that the appropriate action in this case was not violence.