Buzzcuts and Wheelchairs

It’s been a while since I blogged here, and it’s largely because of the Shameless series I have been doing. My personal writing time has been taken up with that project and with academia. Having Behcet’s my usable hours are limited and I have to budget them wisely – do I want to write? Or do I want to buy groceries? For a while things like writing and knitting were winning out and then I almost starved to death with a pathetically empty fridge and I decided I needed to refocus my priorities.

I’ve written about body image in the past and I think it is something that has been on my mind a lot lately. I have a blog in which I wrote about fashion and specifically how it is implicated for wheelchair users. I wrote about discovering fashion and style as a young adult only to having to rediscover it when I started using my chair full time. Reality is that this discovery is an ongoing one. I want to talk more about it. More about clothes, hair, nails, all of that! I am going to start here, with hair.

I am not one to be inherently attached to any one aspect of my physical appearance. My hair changes constantly. I have been sporting a pixie cut on and off since I was around 9. I’ve grown it out several times and it will just brush my shoulders before I cut it off again. People laugh when I say I am growing my hair and I’ve since resigned myself to knowing it will not last with any length for long before I cut it off. It’s fine. I’m okay with it.

In April of this year I shaved my head for the 3rd time. I considered keeping it cropped short for a while and rocking the buzzed look but in the end decided to just grow it out. I wanted the color out. I wanted to start fresh. It was an act of rebirth and a personal decision, rather than a fashion statement or act of style. In the past I have had long periods time with absolutely no hair, not even stubble. I was comfortable with my lack of hair and even liked it. It was so easy in the morning to just get up, shower and go. My pixie cut isn’t difficult either, 2 minutes of blow drying and one minute of product application but that’s it. What ultimately gets me with the longer hair is the 45 minutes of blowouts with round brushes, followed by flat ironing. One day I get sick of it and then I plan a trip to the salon. But I digress.

This time I was totally rocking buzzcut. I only went to a #2 but it was short enough. It was a combined effort by me and two friends. We cut it off slowly in my living room, documenting the process with photos. It was only a pixie cut at the start but it was change enough and change I needed. We had fun and laughed during the haircut and I was pleased with the end result. Having shaved my head before, I knew what to expect in terms of societal reactions. I knew people would stop and comment, telling me how brave I was and how well I pulled it off and how they have always wanted to shave their heads but never had the courage. I was expecting random people to ask to touch my head. But that didn’t happen.

Not only did it not happen but there was virtually no acknowledgement of it. Classmates who I had gone to school with for the past few years said nothing. Professors said nothing. I think the only people who said something were my two doctors who commented on it and asked me why I had done it – both approving of the outcome and motivation. I thought for a while and wondered why this time was different. I hadn’t done it for the attention, and quite frankly I don’t like the attention from strangers so I was happy to not deal with it, but I was still left wondering why no one said anything at all. Then I realized…the wheelchair.

I now embodied sickness in every sense of the word. I was in and out of the hospital a lot and my classmates knew that. They saw me taking medications in classes and I guess they just assumed my new ‘do was a product of my illness. What I did was this awesome empowering, redefining, move that only further engrained the sick role in me. I can’t believe I didn’t think it would happen before I did it, but I didn’t.

I knew when I did it that it would make me own my body and my face. I knew I couldn’t hide. People say you can’t hide with a pixie cut either but those 2 inches of hair really hides quite a lot. I played up my features and wore makeup. I wore necklaces and shiny things. I felt prettier than I did with hair. It helped me accept my body and my image in the chair. It helped me be comfortable with me, while simultaneously making everyone else uncomfortable. I guess that’s one of my best skills though – ensuring the discomfort of others and finding ways to thrive on it.

Shameless Guest Blog Part 2!

Here it is – the second part in my guest blogging series for Shameless! This next part is titled “”Of Duct-Tape and Half Lives”. Enjoy and feel free to post feedback and comments either here or on the shameless site!

 

http://www.shamelessmag.com/blog/2013/05/guest-series-part-2-of-duct-tape-and-half-lives/

Adapt That!: Introducing an Apartment Modifications Mini-Series

Part of my most recent run in with Behcet’s disease has included a vicious reaction to methotrexate that has had a significant impact on how I move my body and the ways in which I access the world. We don’t know how long this will stay this way, if my prior mobility will ever return, or what fun awaits me in the future with this disease. I became quickly evident that I needed move from my inaccessible apartment where I have been “getting by” with a hallway (Gally) style kitchen, a bathroom that is like death for a chair user, and a bedroom with so much stuff in it that I can’t move through it in my chair. The search for new accessible housing began.

While looking for accessible housing I learned a few things. 1. Market rent accessible housing doesn’t exist. 2. Waiting lists for subsidized housing are a million, like actually, years long. 3. I am screwed and going to be living in a hospital forever (did I mention that? I am currently living in a medical hospital because of this housing conundrum).

Now I really don’t want to be here forever. Or even any longer than I need to be. Or even here right now. It became really evident I was going to have to find something that worked okay and then do what I can to make the space work. I’m sure tons of other people have had to do this and then decided to write about it, right? I mean there has to be resources for modifying rental units in non-permanent ways? I thought wrong. There is nothing. If there is something, please do let me know! Lucky for others who will find themselves in this place, I am going to do something about this lack of resources and chronicle my own journey to accessible(ish) housing.

I have done one round of apartment hunting with varying results. I saw 4 apartments in total. One was nice but not super accessible and it had ceramic tile in the living room (eww, right?) and the hallway looked like someone probably had died in it and been left there to rot. Two had deceptively clean buildings with the most disgusting units I had ever seen, including one with a mould colony to rival no other on the bathroom ceiling and a kitchen that looked like a grease fire waiting to happen. The other had been decorated by a herd of 3 year olds and their crayons and the parquet flooring had been ripped up and used by them as building blocks during play time. I was told they would “clean and paint” both units but they needed more than cleaning and painting.

Then came the last one we saw. It was rental perfection for about $150 above my projected budget, but did I mention it was rental perfection? Everything was brand new, from the floor to the appliances, to the toilet, to the kitchen sink. It was complete with large kitchen with space to maneuver my chair and 2 bathrooms, including a stellar ensuite with a perfectly placed toilet for a direct chair to toilet transfer. Having left two desperate messages saying I want it and having cheques ready to give a deposit, I am now waiting for Tuesday when the holiday weekend concludes and I can find out if I actually get this beautiful 900sq ft of Toronto rental space.

If I do get it a whirlwind of hospital discharges, packing, moving plans and adaptive apartment brainstorming will ensue. If I don’t, a whirlwind of desperate apartment hunting will continue. Tomorrow morning my fate will be determined. Either way I will be moving in to a “non-accessible” apartment unit and doing what I can to make sure I can function in the space. Not just survive, but function. I will be writing about it here in a mini-series entitled “Adapt That!” so when you see a post that starts with that, you will know what it is all about!

I am looking forward to doing this and hopefully helping out a few people along the way!

Feisty Deaf and Disabled Goes Shameless!

Faithful followers,

Have you heard of Shameless Magazine? If not, go out and get a copy now or check out their website because you are missing out. It is a fierce publication aimed at young women with a feminist twist and always looking at things through an anti-oppressive lens. I was a faithful reader in my teens and it is definitely where I started to develop my feminist politic. Shameless also has a blog and I have recently been given the opportunity to write about my most recent hospitalization and complications with Behcet’s disease.

My blogs will go up once weekly on Wednesday until the series is done. I will post a link to the posts here and I welcome you to follow me over there to check out my most recent experiences and everything else that they have going on! It won’t disappoint!!!

In the mean time this space may be a bit stagnant, but as always I welcome blog suggestions and I will do my best to fill requests.

ASL/English Interpreters in Health Care, Communication and Self-Expression

I am Deaf and this means that I am regularly interacting with ASL-English interpreters. I am dependent on then in a variety of situations and that in and of itself is an interesting dynamic. When that dependency extends to health care the vulnerability and depth of the dependence is magnified. Not only am I relying on the interpreter for communication but also my health, comfort, medications, and really my life.

I read lips, and well, so a lot of the time I alternate between watching the interpreter and reading lips and I feel like I get a really well rounded picture of what is being said. There are occasionally additional barriers that prevent that from working, like a doctor with lots of facial hair or a strong accent. In those situations I am 100% dependent on the interpreter. Depending on the interpreter the access I get in that scenario varies greatly. I have had medical appointments where the interpretation looks like “He is using big medical words” and others where the interpreter is clarifying constantly and doing everything they possibly can to facilitate as much concise comprehension as is possible.

My rheumatologist unfortunately fits the man with an accent and facial hair description. He is very nice and seems patient to the interpretation process, but to date we haven’t really been able to interpret. Sadly we have had interpreters who are more apt to sign “big medical words” rather than attempt to ensure true communication. I don’t blame the individual interpreters. I understand that Behcet’s disease is rare and so is the terminology that goes along with it, at least for an interpreter.

Where I live a bunch of hospitals joined together and hired two interpreters to work exclusively for them interpreting medical appointments. They would be available for emergencies or urgent care appointments when they weren’t booked for regular appointments. Initially I thought this was a great idea but as I experienced the program more I realized it didn’t really have a positive impact on my access. I no longer had access to preferred interpreters, who were familiar with my medical history, and I didn’t notice any ease with booking interpreters for appointments. I still experienced appointments being moved to accommodate interpreter’s schedules and being cancelled at the last minute due to lack of availability. I am not sure what other Deaf people think but I have noticed no improvement to my access.

This past month I have sent myself on a quest to regain access to Ontario Interpreter Services and my preferred interpreters. In the end I won but only after judgement was passed on me. I was forwarded an email string that wasn’t entirely meant for me. One of the emails sent suggested I was simply upset because my language, ASL, didn’t have words to communicate the terms that relate to Behcet’s disease. It was all linked back to me and my lack of understanding, my naiveté to my own language and its “limits.” No one ever thought to question the role of the interpreter and their ability to work in the medical setting with a complex patient.

This assumption extends beyond interpreter services in health care. All health care practitioners tend to bring it back onto the patient. It is our fault if we are in pain. It is our fault if we are non-compliant with our medications. It is our fault if we don’t follow through on testing or treatment plans. The reality is that patients are complex. We hold multiple layers and identities and many of us who are deeply engrained in the system are experience a complex array of marginalizations and oppressions. Financial constraints prevent access to medications, linguistic barriers prevent access to treatment explanations and following through can be challenging, employment responsibilities make attending appointments and tests difficult, and the list goes on.

It is time that health care providers and medical support professionals learn to look externally. They need to be able to see the complexities of the patients they interact with, beyond just our rare diseases and interesting diagnoses. They need to understand all of the layers that impact our lived experience and access to health care. Most of all, they need to admit what they don’t know. The interpreter coordinator who made that comment, that I was just upset and confused because ASL doesn’t have works for my disease, never thought to ask me what the problem was. She never thought to ask what the solution was. She just made assumptions.

I recently gave this feedback to a young doctor – that she must learn how to admit what she does not know and ask questions to seek the answers. I encouraged her to look to her patients for information on how to treat us. Sadly this feedback was not well-received and claiming that I was not confident in her abilities she refused to continue to treat me. The sad thing is that I think she is a great doctor and I think she just needs to continue to engage in her growth and learning as a young physician. Her assumptions related to confidence in her ability to treat me go right back to one of my points of this blog entry – she didn’t ask me. She didn’t let me dictate what I needed. She didn’t let me explain the problem. Instead she chose to define the problem for me and let that impact my access to care and services.

I don’t know how the field can move past this until it can humble itself to the knowledge patients hold. I don’t mean medical knowledge, but I mean knowledge of our bodies and our lived experiences. Our feelings, our ideas, our lived experience, that is for us to define. That is for us to express. For Deaf patients we have an extra barrier to that expression, which are interpreters. Maybe it is easier for hearing patients, but I suspect the barriers persist regardless of linguistic and cultural identity.  

Requests!

Hello faithful readers,

I have put this out there before but now I am serious! Are there any topics that any of you want me to write about? Anything at all! Please post blog topic requests in the comments below and I will see what I can do!