• • (dis)Ability
  • Body Politics

  The Costs of Conforming

  December 31, 2012 • Shoshana Erlich

  One of the things that continually astounds me about being disabled is just how incredibly expensive it is. Almost no matter what area of life you look at, it costs more to be disabled. While it doesn’t surprise me, it also infuriates me how little recognition there is of that fact. There is virtually no recognition that as a young disabled person, my cost of living is exponentially higher than a non-disabled person’s.

  Despite the fact that I have multiple disabilities, so my case may be different from others, I’m going to use it anyway, because many people with disabilities have multiple disabilities.

  First case in point is medication. If you are healthy, your monthly medications may include some over the counter things, perhaps birth control, and maybe if you get sick, a course of antibiotics. If you are a student, most insurance companies, if you aren’t lucky enough to be covered under your parents insurance plan, cover about 80% of your medication costs. One of my drugs is $250 per month, and another, $150. Not too long ago, I was on a 10-day course of medication that cost $700. 80% coverage doesn’t go very far when you are looking at those kinds of numbers. Although there are programs in Canada to help with some drug costs and they can be claimed on income taxes as a tax write-off, when you don’t have the money in the first place, it is really hard. (more inside…)

• • (dis)Ability
  • Body Politics
  • In My Opinion...

  A Disabled Haircut?

  November 26, 2012 • Shoshana Erlich

  Yesterday I got a haircut.

  For most people this sentence is seemingly innocuous, perhaps offered as a response to someone asking “What’s new?” or traded in other casual conversation. For me, it brought home a really powerful lesson of how no matter what I do, no matter how seemingly innocent or normal my activities might be, it is impossible to separate out me from my disabilities. While it would seem silly to say that I got a disabled haircut, that is in fact exactly what happened.

  To start off, where I get my hair cut is often fairly busy, and through the process of going there for years I have learned that the best way to make sure that I get an appointment to get my hair cut when needed is to book my next appointment when I am leaving the current one. For me though, this is always a moment of pause. I have a chronic illness that flares up, often with no warning, and while flares vary, a flare can easily put me in the hospital. It can sometimes very much be like a dice roll to know whether or not I will be well enough to actually go to the appointment that I make. In fact, had this particular appointment been a week earlier I would have been too sick to go. I’m not saying that planning in advance is a bad thing, and while appointments can easily be rescheduled if need be, when you have a chronic illness trying to make plans for your future with uncertain health can be difficult.

  Then, when I arrive at my appointment using my walker, my disability again becomes highlighted by the fact that the building is not in fact accessible. As I’ve been to this location many times I knew what to expect, and knew that the stairs in question were within my abilities. However, the angle of the door and the step to get in meant that I could not get myself and my walker into the building without help. Once I got inside the staff were excellent about consulting me about the kind of help I would need to get upstairs and providing it. I can’t say enough about how awesome it is when people are willing to ask what kind of help is needed/if help is needed and provide it under direction.

  To add to this, there is the appendage known as a hearing aid sticking out of my ear and the need to keep water out of it. Typically during a haircut the hearing aid stays out of my ear, and a swim plug to keep out the water goes in. This means that communication can be difficult. When you factor in getting your hair washed, and the sound of water near your head, communication can be almost impossible at times. Again, this time my hair dresser was awesome, repeating things that others said close to my good ear for me, making sure the water was off before she talked to me, acting as a communication facilitator while cutting my hair, perhaps even unknowingly.

  Yesterday I got my hair cut and I had a great time. The cut is incredible, the hairdresser and all the staff there were awesome as always, and it was a great experience. It was still however a disabled experience. I am always struck with the contrast when I see how non-disabled people approach seemingly mundane activities compared to what is involved for me. In this setting accommodations were seamless and I was fully accommodated, but something regarded as so simple and taken for granted is greatly altered by the presence of disability. For me the point that this story brings home more than anything else is that in any setting I am disabled, and when someone sees me they need to see my disability. Without seeing my disability and accounting for it I cannot be properly accommodated. I can’t be included. My voice doesn’t represent me unless it is understood to be a disabled voice. While it can be controversial, for me this extends to why I don’t identify with person-first language (ie. that I am a person with a disability) but rather as a disabled person. When others deny to see me as a disabled person, they deny to see that everything that I do has that ridiculous sounding (disabled) written in front of it.

• • (dis)Ability
  • Body Politics
  • Rape Culture

  To the Guy at Yonge and Dundas

  August 15, 2012 • Shoshana Erlich

  To the Guy at Yonge and Dundas:

  Hi,

  I’m a bit new at this, having come a bit late to the physical disabilities side of this game, so forgive me if I don’t sound grateful for what you did or something. I think it’s part of the privilege that goes with having grown up in a disabled bodied that has always managed to pass as able-bodied. I have some expectation of my own independence and right to manage my own body instead of it becoming property for others to manage and manipulate for me, with dispassionate hands and voices.

  It’s been an adjustment for me you see, to have to figure out how exactly it is that I should act and behave. Shocking for me that I should be expected to spill exactly “what is wrong with my legs” to random strangers in grocery stores; on busses; in the drug store; everywhere that I go. I thought that I was entitled to a sense of medical privacy. Years of dealing with invisible illnesses has taught me that people don’t really actually want to know, it’s just some way of turning the disabled into a freak show. That our misfortune becomes the entertainment of the minute; hour; day; week.

  I don’t think I ever got the memo that disabled people were supposed to be passive, helpless and dependent. I go to school, I work, I’m an activist (even if it is sometimes just an armchair, or more likely bed activist because that’s all my huge fatigued activist heart can manage). In fact, yesterday when you so confidently inserted yourself upon my life I’d been spending my morning at the Ryerson library, working on a paper for publication, which is ironically focusing on how we as researchers can do a better job of working in the Deaf community because disabled people can contribute to the academic discourse now. I have goals and dreams and I’m getting out there and doing it. It’s been hard to reconcile that image with someone who uses a mobility device, who has to ask for friends and family to help me with certain tasks, but there are only so many times you can barely manage not to fall while using a cane before even a young person accepts the inevitability of needing a walker or more intensive interventions.

  (more inside…)

• • (dis)Ability
  • Body Politics
  • Gender
  • Trans-

  An Intersectional RSVP

  November 28, 2011 • Shoshana Erlich

  Dear Event Organizers:

  I sincerely appreciate your open invitation to attend your event on this important issue, however, I find that I must respectfully decline.

  As an activist with a complex identity, it is difficult for me to condone attending an event that, while seeking to explain and draw interest into a matter that is very near and dear to my heart, has managed to ensure that my participation in your event will be virtually impossible.

  While I can appreciate that your event is being held in a wheelchair accessible venue, it is important to recognize that that in and of itself does not ensure that your event is indeed accessible. Had you publicized your event further than one week in advance I would have been able to contact you and request an interpreter in order for me to be able to attend. Additionally, while I appreciate that many events are being put together on a tight budget, when you inform me that your event is unable to provide interpretation services due to the cost required that tells me that there is a dollar figure attached to my participation, membership or sometimes allyship in this community. Furthermore, while attempts to find out if a video is captioned are appreciated, it would be best if that information was publicized on the event details. An even better response would be that upon finding out that a video is uncaptioned that the suitability of another video being shown was examined as well as banding together as an intersectional group to apply pressure to filmmakers to ensure that their videos are captioned and accessible.

  As someone who identifies as genderqueer, there are also additional barriers to my participation. (more inside…)

• • (dis)Ability

  A Disability Back-to-School Guide

  September 30, 2011 • Shoshana Erlich

  September often brings with it a slew of back-to-school guides. It comes with tips for everything from how to handle your kindergartener’s first day of school to entire books full of transition tips for those just entering their first year of college or university. Being a student with a disability in post-secondary education can be pretty confusing, and even though most schools are willing to walk you through some of the basics, there are lots of things that sometimes need to be learned from experience. So, just to add to the pile of back-to-school guides out there, here are some tips on how to navigate the strange world of accommodations in post-secondary education.

  1) Register with the accessibility office in your school. This is the step that schools are usually pretty good about telling you about. Every school will have a slightly different procedure. Most accessibility services in schools are usually pretty medically-based. Be prepared to have to show medical proof that you are disabled, and many schools will want the doctor/other medical professional to tell them the accommodations that you need. This is problematic on lots of levels, but for this post I’m going to focus on how to make the system work for you rather than challenge why it exists as a whole. If the accessibility office will not give you the accommodations that will work best for you, ask them why, attempt to find some kind of compromise. Bring the issue to the manager’s attention if necessary. If you know that the accommodation is something that will help you succeed, it is important to ask for it and fight for it.

  2) Inform your teachers about your disability/accommodations. This part is essential. Just because you have registered with the accessibility office doesn’t meant that you are automatically accommodated in your classes. Most schools have a policy that students with disabilities are responsible for informing their professors, and until the professors are informed they are not obligated to accommodate you in any way. Most schools do this by providing students with information sheets to give to their professors.

  There are lots of important things to know about this. Students do not have to tell their professors what their specific disability is if they don’t want to. Students should be giving this information to professors as soon as possible. It is a lot easier to make the case for an extension on an assignment if your teacher knows this is one of your accommodations at the start of the semester as opposed to handing in the piece of paper to the professor while asking for an extension on the assignment due tomorrow. It can definitely be awkward to identify yourself this way, especially if you have had negative experiences when people find out about your disability, but by identifying yourself you are protecting yourself. The piece of paper is kind of like a contract between you and your professor; you fulfill your role as a student by telling them what they can do to help you learn, and they fulfill their role by fulfilling the guidelines put out in the document as best as they are able to.

  Another thing to know is that the piece of paper the accessibility office provides is usually incredibly general. This means that it usually isn’t a good idea to just hand the piece of paper to the professor and walk away. Sometimes it is really important to have a conversation or provide more information about what the things written on the paper really mean. For example, one of my accommodations reads “Sign Language Interpreter,” and that is the extent of the information that my professors get about my accommodation. However, as most professors have not worked with sign language interpreters before, there are lots of things that they need to be made aware of to make the process go smoothly. What I have done and have found to be pretty helpful, is I have created basically a form letter that is kind of a how-to guide for my accommodations and I make it a point to send it to each new professor that I have, and if I have professors again multiple times, I check in with them at the start of the term to let them know about anything new regarding my accommodations.

  (more inside…)

• • (dis)Ability
  • On The Job

  When Working is Radical

  September 7, 2011 • Shoshana Erlich

  It seems that I am something of a radical. That the things that I think, believe in and work towards are such a shift from the patterns currently entrenched in society that I am often mocked for my views and my tireless belief that eventually, we can get there.

  This summer, I had my radicalism confirmed by something that was decidedly non-radical. I decided that as a student, I needed a summer job. At the time, I thought that this was actually a relatively moderate idea, after all, I am finding myself forced to subscribe to academia, and the world of student loans and independent living, and everything seems to have a price tag attached to it. Since in this society we exchange labour for funds, getting a summer job seemed to be a fairly logical and extremely non-radical proposition. However, I quickly discovered that the concept of being a young disabled person who wants to work is quite the radical concept indeed. While this post could easily talk about the extensive discrimination I have faced as a young disabled person in the workforce, what I think is much more interesting are the broader systemic structures that force young disabled workers into positions of extreme vulnerability within the workforce.

  (more inside…)

• • (dis)Ability

  Centering Disability and Accessibility

  August 30, 2011 • Shoshana Erlich

  Recently I was asked to attend an event. I was quite interested in the topic, and given some of my recent work experience I was actually really excited about the event. The person who asked me to be there is one of the main organizers, and so when I knew I would be able to be there for sure, I let them know that given the size of the event, I would need interpreters in order to be able to attend. When the cost of providing interpreters became known the response was that we’d love to have you, but it’s too expensive and in the future we will make sure that we have a budget for interpreters.

  Although there are personal reasons why this frustrates me, the more frustrating part is how invisible disability is within our community. I know several people who do fairly inclusive event planning. By which I mean they strive to ensure that events are accessible in terms of race, class, family or immigration status etc. Childcare is typically provided, event fees can be made sliding scale or optional, there is recognition of oppressions and people seek to ensure there is representation and equality. However, for events taking place outside of the disabled community, the same effort for disability is rarely made. Efforts for disability are often tokenistic at best. The event is held in a wheelchair accessible location. We’ll even try to make sure that an accessible washroom is thrown in there too. While these are important accommodations and I don’t mean to belittle them, they are a tiny piece of providing a truly accessible event.

  (more inside…)

• • (dis)Ability

  What I Wish Non-Disabled People Would Understand

  July 6, 2011 • Shoshana Erlich

  Sometimes having a disability can be incredibly frustrating. There are times where it outright sucks so much you want to pound your fists into the wall and cry. There are times when you wish more than anything else that people around you understood what it was like and that they didn’t treat disability like it was some kind of bomb about to go off in their faces if they get too close. After spending the last couple of weeks in bed and dealing with chronic illness and all of the fun things it brings with it head on, here are some of the things that I wish non-disabled people would understand about this:

  1. I am still me. Everything about who I am - what I like, how I feel about things, who I care about, my intelligence, my identity - is exactly the same regardless of whether I am obviously sick or not. This means that me being sick does not need to be the only thing that we talk about. While it is my immediate reality it is awkward to talk about, gets old really fast, and typically puts me in the position where I have to make other people feel comfortable around the idea of me being sick. There are a million and one other things to talk about, and I probably spend most of the time that I’m not talking to people dealing with being sick, so a change of topic is nice and better for both of us.

  (more inside…)

• • (dis)Ability
  • Body Politics

  The Myth of Informed Consent

  June 29, 2011 • Shoshana Erlich

  One thing that you find out pretty quickly when you have a disability is that the moment that label is applied to you, you never really get to own or control your body again. There are lots of different ways that doctors can control your body when you have a disability. For example, they can place a hold on you which declares you a danger to yourself and others and that means that you are basically incarcerated in a hospital for 72 hours which theoretically can only be extended so many times, but can end up resulting in far longer hospital stays. They can put you on a community treatment order where you are made to comply with a doctor’s treatment plan for you such as attending regular ECT treatments as a condition of being able to remain in the community. Although both of these examples primarily apply to mental health, don’t be fooled into thinking that those with physical or cognitive disabilities are any better off.

  Theoretically, informed consent is supposed to allow patients to be informed of exactly what procedure will be done to them, how the procedure works (with as much detail as the patient is comfortable with), provide the patient with an opportunity to ask any questions that they might have about the procedure, including benefits, drawbacks and other options and allow patients the opportunity to refuse to consent to a procedure they don’t feel is necessary or beneficial. However, I think that true informed consent is rarely, if ever, realized. There are too many other factors that intervene.

  (more inside…)

• • (dis)Ability
  • Body Politics

  A White Coat Doesn’t Make You an Expert

  May 18, 2011 • Shoshana Erlich

  Like it or not, disability is irrevocably tied to the medical community. I’d like to take some space over the next few posts to explore how disability and medicine collide. For today, I’d like to start by challenging the role of doctors as experts.

  Don’t get me wrong; I am not anti-doctor. Like most people, I have had some excellent doctors, and I have had some pretty terrible ones as well. Mostly I am against the way that all doctors are seen as experts, and the emphasis placed on having a label for what is wrong with you.

  When you notice that something is wrong or different with your body, you go to the doctor. The doctor listens to you describe what is going on, and then attempts to verify what you have told them in some concrete way. This may mean that they draw blood, send you for an x-ray, look at various body parts, or any number of other tests that they could choose to perform. Then, they compare the results to what they know about the body. Are the numbers too high or too low? Do your organs look the way they are supposed to? Are there lumps growing where there shouldn’t be? Each answer points them in a direction to look for what might be going on. Eventually, if you are lucky, the things you are telling them and the things that they test will line up to match with a state where they know what is going on. The doctor will have come to a diagnosis, which also tells them what usually helps to fix the problem to the best knowledge that medicine has. Again, if you are lucky, there is a treatment that fixes the problem, and you go back on your merry way.

  (more inside…)

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