Where are Fredrick Bilodeau's skis?

Hey! Again this is not at all what I need to be doing. However, there's a lot to blog about this month. The Olympics is here. The games have been politically charged but, also a great show of sportsmanship.  I felt compelled to write a larger reflection on Alex and Fredrick Bilodeau. I am not an avid fan but, this is what I have learned via mainstream media and facebook about the brother's Bilodeau.

Alex is an amazing bilingual skier. He has won Gold twice at the Olympics for Canada. He is driven and inspired by his brother. Alex loves his brother very much.

And this is what the mainstream media has taught me about Fredrick

HE HAS CEREBRAL PALSY (CP) AND HIS BOTHER IS A WICKED AWESOME SKIIER. FREDRICK LIKES TO WATCH HIS BROTHER COMPETE BECAUSE HE CANNOT. ALSO HE HAS CEREBRAL PALSY!!! WHAT'S THAT? THINK OF THE WORST THING EVER....CP IS INFINITY TIMES WORSE THAN THAT.

In reality: Fredrick also skis. In fact that is why their parents encouraged Alex to take up skiing because they could do it as a family. My source on this is my friend Vivian. However, both times, Alex has won gold I have seen little media that positions Fredrick as anything other than his brother's cheerleader

See the difference? See how Alex is positioned? See how Fredrick is positioned? Remember, I am not talking about a full on google search, where I took the day off work to learn everything there is to know about the Bilodeau's. This what I have inferred through newspaper articles, the odd facebook post and news radio.

Here's my deal: I am really happy Alex Bilodeau won gold. I am also happy that his brother is his biggest fan. They have a really beautiful simpatico. However, I am a bit put off that every time someone talks about the Bilodeaus they mention that Fredrick has CP. I question if Fredrick was gay would we keep bringing it up (to be fair in Russia we might). If Fredrick was left handed would we keep bringing it up.  I also wonder why the media and Alex himself are using disability as a master status.  Disabled is  just one intersection of  Fredrick's identity and it may be just one of the reasons why he likes to watch his brother ski. In a way I get it, there are things physically I cannot do that I appreciate or am inspired to watch.  I cannot sing very well, I like to listen to people who sing well. I am impressed. There are athletes who are better than me at sports I play or used to play that I appreciate watching because, it is inspiring to see high level competition. When my sister swam I liked to watch her swim because I felt proud of her. However, I have never felt as though I was living vicariously through someone else. There are embodied experiences I will never have but, that is true of anyone.  The times in my life where I did feel envious or sad that I could not physically do something often came from a poverty of experience or a lack of alternative opportunity. For example: I would like to be able to walk because it would be easier to play beer league sports and  participate in marathons.  That being said really the reason why I can't do these things stems more from a lack of imagination that beer league sports or affordable racing equipment would be available to people with disabilities. 

 Don't get me wrong CP is my favorite palsy. I just question why Fredrick's only identity is that of someone who lives through his brother. Alex was quoted as saying "Just like you and I, he has dreams and most of them are not realizable to him. But he never complains that it’s not realistic to him… He lives his dreams through me", in the Denver post (a quote that has not gone viral on the internet). There's no reason why Fredrick has to live through his brother. Disability is an identity not burden.  Fredrick skis too, let's talk about how Fredrick skis. I sincerely hope this is a media driven, over sensationalized, or perhaps something is lost in the translation?

There is adapted skiing. Further, Fredrick could develop an interest independent of his brother. Perhaps, he already has other interests. I am disappointed that in an Olympic games  that has pushed back so hard against oppression and marginalization of sexual identities, and preached diversity and tolerance disabiltiy is positioned as something to be treated with well intentioned pity.

In reality Fredrick is bilingual, a world traveler, a devoted brother, a sports fan. He has Cerebral Palsy, all of these identities intersect.  He is not all of these things in spite of CP or because of it but, rather "With".

If anything Fredrick's appearance at the Olympics is an occasion to reflect on all of the many folks with Cerebral Palsy in Canada and how we support them as a country.  Where are Fredrick's skies?


*For the record CP is a neurological condition often caused by lack of oxygen at birth. It has a wide range of "symptoms" and embodiments. This is the condition I have. There are many successful folks with CP. Further, to this people with CP don't need your pity or for you to throw yourself down a hill (Bilodeau styles). They need allies in the fight for barrier free spaces, and opportunities for equity *

A Refreshing Perspective on Mothering and Disability

Currently, I have a ton of both personal and professional things to finish in the next 8 hours. Of course now is a perfect time to update the blog I love but, often neglect. My secret new years resolution was to update the blog at least once a month, I have one day left to make good on my resolution for January. Hooray!

I came a cross a beautiful excerpt from a documentary about mothering. The clip profiles  Corbett O'Toole and her adopted daughter. O'Toole is a disability rights activist and independent scholar. She was on the ground floor for much of the disability rights and independent living movement during the 70's in America, I believe. Correct me if I am wrong. I am reading "Don't Call Me Inspirational" by Harilyn Rousso who mentions meeting Corbett in the 1970's at a disability rights organization. This is how I am placing her.

I was particularly moved by the Story of O'Toole and her daughter because, Corrbett uses a wheelchair and her daughter has CP. She speaks about it being a deliberate choice to adopt a baby with a disability.  She also captures the idea that a disabled baby has value and that the disability experience has value. She talks about being able to teach her daughter about moving through the world in varied ways. O'Toole also speaks about wanting to share the experience of being a woman as something that is interesting and worth while. The clip also mentioned that O'Toole's daughter may have ended up in a hospital or large facility had she not adopted her. 

I love this so much because if I were to become a parent this is what I would want. Disability or not, I have had the opportunity to meet many children whom no one wants, and who do not understand their own value. I understand myself as not having a great desire (today I can't promise that I won't change my mind) to physically conceive and birth a baby. However, I would love to share my resources, love, experience and disability identity with a child. The story of Corrbett and her daughter is inspiring to me because I have never seen the type of simpatico I have just described in real life. 

Further, to that Corbett became a mom in her 40's which means that I still have a solid ten years to get my life together.

Here is the clip I am speaking of: 
  
http://vimeo.com/6045202 

A Leap of Faith: Re-thinking disability soldiery and peer support (I WENT SKYDIVING)

**I wrote a couple of articles for the newsletter at work. I have adapted them for the blog**              

           
 This summer, I had a fantastic once in a life time opportunity to complete a tandem skydiving jump. I jumped as part of a fundraiser for a great organization called AboutFace.  AboutFace is a charity which supports adults with facial differences. The fundraiser was specifically to fund their Trailblazers camps. This is an outdoor youth retreat for youth with facial differences to learn advocacy, leadership skills, and connect with their peers.

Sky diving was a breathtaking experience, but above all the opportunity gave me pause to think about disability solidarity and the notion of peer support. I became involved in the Leap of Faith fundraiser because my friend Colleen Wheatley works for AboutFace and has a facial difference. Over the years I have been struck many times by the parallels between having a facial difference and living with a disability. I have cerebral palsy and use a wheelchair. I often find myself speaking with Colleen about various political and social issues that pertain to people with disabilities and we share a common understanding. We both have had some amazing experiences (such as jumping out of a plane) in life but have also negotiated marginalization and discrimination.  I value my friendship with Colleen as we have been able to support and celebrate each other in our lived embodiment. Peer support has taught me “disability pride” and serves as a reminder that I am ALWAYS valid and ALWAYS deserve to participate. When I feel degraded Colleen’s sense of dignity and sense of purpose invigorates me and reminds me that oppression is systemic and not inborn within in me. Society’s view of disability, not myself or my disability, is the real issue.

I am happy to support Trailbralzer’s camp for youth with facial difference because I think it is important that people with disabilities have space of their own choosing to come together to both celebrate the nuances of their disability experience and garner support and strength to negotiate the social terrain that has yet to be flattened.  I invest my free time in causes such as Trail Blazers/AboutFace because it is my personal belief that strong disability soldiery leads to strong self-advocates and sense of self.  

me in free fall with Sky dive instructor Sam (Same name) at Skydive Burnaby

Photo credit to: Rich O'Neil at Skydive Burnaby www.skydiveburnaby.com. Please do not lift or use this picture with out expressed permission from myself and Skydive Burnaby

Myself and my friend Colleen

This photo credit goes to my mom. Please do not use this image without my permission

In case you are not feeling so Brave today!!

Hello,
I would like to depart from my usual social commentary. To provide you with my new theme song:

Brave by Sara Bareilles
  
"Brave"

You can be amazing
You can turn a phrase into a weapon or a drug
You can be the outcast
Or be the backlash of somebody’s lack of love
Or you can start speaking up
Nothing’s gonna hurt you the way that words do
When they settle ‘neath your skin
Kept on the inside and no sunlight
Sometimes a shadow wins
But I wonder what would happen if you

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

Everybody’s been there,
Everybody’s been stared down by the enemy
Fallen for the fear
And done some disappearing,
Bow down to the mighty
Don’t run, stop holding your tongue
Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

And since your history of silence
Won’t do you any good,
Did you think it would?
Let your words be anything but empty
Why don’t you tell them the truth?

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
See you be brave

I just wanna see you
I just wanna see you
I just wanna see you

I just wanna see you
I just wanna see you
I just wanna see you

Ironically, I think this song fits with the theme of our blog. As much as I advocate acknowledging and recognizing systemic oppression. I also acknowledge that one must survive and live through their oppression or marginalization. I know many people who are working to navigate their own experiences of oppression.  I also know many folks who are working to change social injustice within Society. I admire all of you! Keep being brave! I wanna see you be brave!

Sam
 

"Maybe they just didn't think?": Everyday Micro discrimination with a Macro Cause or "Why the same stupid shit keeps happening "

Hello!

My apologies…I have been neglecting the blog. I appreciate that Jo has been keeping up with the posts and keeping things active. I’ve had a lot of changes in my life as of late and been busy with work and school. None the less I am happy to be back.  Recently a friend (facebook friend: Amanda Achtman) asked for my opinion on the article:“ The Photo That Broke a Mother's Heart that ran in the Calgary Herald and now seems to be making the rounds on facebook. Here's the link to the story below:                                     

(http://www.calgaryherald.com/news/photo+that+broke+mother+heart/8523350/story.html )    

A short summary: A young boy who uses a wheelchair was photographed with his class for picture day but, forced to sit off to the side well out of the centre of the photo. He does not even appear to be apart of his class in the photo. His parents are upset about the photo and feel he was treated differently by the photographer and the school because he is disabled 

 

I find it particularly interesting the Herald has chosen to run a story about a class photo when the province of Alberta has just made massive cuts to their attendant services and services for persons with developmental disabilities programs.

Learn more about system oppression of disabled people in Alberta below:

 http://www.sunnewsnetwork.ca/sunnews/politics/archives/2013/05/20130531-190112.html 

These are the programs which provide people with disabilities and seniors attendant services and supports to be active and included in the community. 

I thought my answer and reflections on the article about the photo were worthy of a blog post…rather than spamming everyone’s wall with my opinion.

While, I feel perhaps a school photo doesn’t merit a viral news story. I sincerely wish we could get this outraged about a lack of accessible housing or cuts to outreach attendant supports which allow people with disabilities to live and work independently. I feel this is a great example of how systemic discrimination bleeds into the everyday and mundane experience. The disabled boy being awkwardly positioned and seemingly excluded from the photo is a mircosim of what happens when we willfully as a society allow for the “othering” and marginalization of another group based on difference. We organize our societies with an “expected or assumed” able body in mind then we put the burden on the individual who we understand as different to conform.

It is no wonder the photographer set up the picture in such an exclusionary way. If we use Toronto as an example (sorry, I live in Toronto at the moment). The Toronto District school board still hosts 8 fully segregated schools for disabled students (students do have the ‘right’ to go to a mainstream school but, are encouraged to go to the ‘special’ schools). In Toronto there is a 8 year waiting list for wheelchair accessible rental apartments. Only 15% of adults with disabilities hold jobs and of those there is almost chronic under employment. If people with disabilities are not actively involved in our schools, are not in our workforce, and struggle to be our neighbors and friends. How is the “average” person supposed to understand and imagine a disabled person within the context of our daily life if they are never “there” in meaningful ways? We create an exclusionary system and then get confused when it manifest within the everyday. It is likely that the photographer did not go to school with anyone with a disability. It is possible the photographer moves through their community never interacting with a disabled person in a meaningful way and therefore does not have the capacity to understand a disabled boy as legitimate. How this manifest on a practical level is a professional photographer would not have the experience or skills to do a visually pleasing class photo including a boy in a wheelchair. The common argument is that “people just don’t know” and we just have to have “diversity training. However, I would argue it’s not about having a two day training it’s about creating a society where we expect a body of difference, so much so that we intrinsically “know” how to take photos of people in wheelchairs.

I think it is easier to report on things like class photo exclusion because if we examined the systemic issues that create these more minor situations we as a society would be forced to examine our current social organization and that means doing something. It's easier to pity victims than to ask why they are victims?

Reclaiming Our Bodies and Minds (Disability Oppression Action Conference).

Hey Everyone!!

So February and March have been busy months. There is much I want to blog about but, of course finding the time is always a  challenge! 

Today though, I wanted to write about a conference. On March 16^th I attended and presented at Ryerson University’s Reclaiming Our Bodies and Minds (Disability Oppression Action Conference). This event was hosted by RyeACCESS and The Ryerson Student Union (http://www.reclaimingourbodiesandminds.com/workshops/). It was a great conference bringing together: community members, activists and academics. I really enjoyed meeting people and learning from them. I presented:  

"When academia, lived experience come together: reflections on the medium of blogging and the connection between lived experience and social".  

The presentations were divided into streams my stream was: Disability in Post-Secondary Education. The description of my paper was as follows:

Description:  This paper reflects on my experience as a co-blogger on a disability issues blog: “East meets West – Sam & Jo’s Perspectives” (http://eastmeetswexx.blogspot.ca). I wish to think about how critical analysis provides access to a discourse which creates a language of liberation for activists.  To explore this I will reflect on how Jo Kelly and I came to be bloggers. I wish to use my relationship with Jo as an example of how the activist and academic community are intertwined.  To further investigate my experience I will think along with disability scholars such as Irving  Zola, Tanya Titchkosky , and Rod Michalko.

This was my bio (Fancy eh?)

Facilitator Bios:  Samantha Walsh is a disability scholar, activist and has experience within the professional service sector.  She is currently a Doctoral Candidate at the University of Toronto-OISE In the department of Humanities, Social Sciences, and Social Justice Education (HSSSJE), formerly Sociology and Equity Studies.  Samantha completed her undergraduate degree in Sociology at the University of Guelph. She also holds a Master’s degree in Critical Disability Studies from York University. She is also the co-host of a blog “East meets West-Sam and Jo’s perspectives: A Canadian perspective on disability issues in Canada and around the world”.  Website: http://eastmeetswexx.blogspot.ca/

The presentation was an hour long which is a very long time to present an academic paper so; I decided to do something a little different. I do not usually do workshop style presentations. Normally, I do academic panel presentations. In an academic structure you just read the paper or do a power point presentation.
I tried to create a community conversation by reading two examples of blog posts by myself and Jo. I also used open ended conversations to try and facilitate communication and generate ideas about blogging as a tool for activism. I was quite pleased by the results this yielded: A community conversation that brought together many rich perspectives on disability, access and the community at large.

I feel honored to have had the opportunity to present at and attend such an amazing conference. I think this is the future this is where change is happening when critical theory, academia engages with activists and people who live out experiences of marginalization, change and self empowerment. I was inspired to make my research my relevant to those whom do not have the opportunity to sit with me in school.

Thank you RyeACCESS and The Ryerson Student Union for giving me such an amazing opportunity and reminding me that without action theory is nothing and without theory action is nothing (I am sure someone else said that because, I am not that eloquent, I can’t remember who…).  This was the reminder I didn’t even know I needed that community engagement is invaluable to the process of social change.

What a great way to spend a Saturday!!

SAY WHAT but also WHEN: Thinking about context, language and disability

Hi everyone,

I think it’s interesting Jo published a blog on “words that make her barf” because, I recently read two online articles that made me consider that exact same thing.  The first one was “A Letter To the Guy Who Harassed Me Outside the Bar ” (http://www.rolereboot.org/culture-and-politics/details/2012-12-a-letter-to-the-guy-who-harrassed-me-outside-the-bar) by Emily Heist Moss. The second “How to Talk to a Normal: A guide for the rest of us” (http://www.disabilityandrepresentation.com/2013/01/28/how-to-talk-to-normal-people-a-guide-for-the-rest-of-us/) by Rachel Cohen-Rottenberg. Both articles made me think of many things but, specifically the experience of being approached by strangers on the street. I was then further motivated to write my thoughts down because I thought it would make a fantastic addendum to Jo’s post on words.

Heist Moss’s article is really well written. She brings up several really astute points about: ”Rape Culture” within western society. She is also able to bring to light how we as a society have normalized the objectification and public humiliation of women so much so that it is ubiquitous within western culture. Heist Moss gives space to a really important discussion of the social position of women and gender relations. I don’t wish to take away from that. Further, at some point I would like to complicate the discussion by thinking about what it means to gain the public attention of men (or lack thereof) as a woman with a visible disability. However, the point Heist Moss made that really struck me was her discussion that the “catcalling” is ongoing and so frequent that it has no novelty. Further, she is able to connect the harassment to the notion that the women receiving the taunt do not know the true intentions of the men and thus must prepare for the worst. She contends the harassment is not just the work or a few rude individuals by rather the manifestation of a cultural zeitgeist.   It was this point that made think “that’s my issue with ongoing questions and comments from strangers about my disability”.  I am greatful to Heist Moss for finally making this manifest to me. I have literally spent years trying to pin point why sometimes I like to answer questions and sometimes I don’t.   

Here it is: Much like Heist Moss writes in her article the guy who harassed her outside the bar is one of many men (that week) who have harassed her. This interaction for her is on-going and irritating. This is my experience with intrusive questions and comments. For example: Many people are surprised I can drive (I am very grateful I can drive and recognize many people disabled or not can’t), however on any given day 3 or 4 people will stop me to inquire: how I drive? To say it’s really great I can, or tell a story about someone they know who is disabled…etc… My irritation with this is two-fold: the first much like Heist Moss’ experience with men harassing her, people stop to ask me about driving all the time. So unfortunately if you are the millionth person I am going to be annoyed. Further, I find when I am annoyed this is then interpreted as “people with disabilities don’t like to talk about their disabilities ever…so just don’t”. I find it interesting that in my experience there is not a lot of thought given to the context of this situation. As it’s my blog I am going to point out the difference that context makes. Yes, I get asked lots of questions about my disability and yes sometimes it is annoying. However, if we are friends and you have a question that is very different than someone interrupting my shopping to ask how I pee. If I want to participate in something and we need to think of how to adapt it? It makes sense that you would need to know what my disability is and what I can do. If knowing about my disability helps you support me to do something, or brings us closer together it makes sense.  However, if you don’t know my first name it is weird that you want to know about my body. If I am doing something that you would not normally talk during (peeing, changing, having a conversation with someone else, eating dinner in a public place not with you and you have to walk across the room to speak with me) this is not an appropriate time or place for you to ask. Further if you are simply inquiring for your own information this is annoying. This is annoying because it usually happens when I am running late or trying to do something.   

To make my point clear here  are two examples. I recently took a cardio boxing class. The class is designed for people who can walk, run and jump. The instructor is also a spinning instructor whose class I take. We are friendly and she knows me. When I approached her about taking the boxing class, she said she would need to know more about my “situation” and then apologized because she didn’t know the right word. I said “situation” seemed like a good enough word and went on to explain my experience of disability so we could think about adapting the class. While I appreciate her tact in broaching the subject of my disability, I didn’t mind answering her questions because, we know each other and there was relevant context. Alternatively, I recently had someone randomly ask me if I live with a helper, and who pays my rent? I have never met this person. I assume they live in my apartment but, really don’t know. I was rude to this person because it is none of their business how I live or who pays my rent. Further, I am annoyed at this person’s query because it implies again that disability somehow troubles the human experience. We don’t question how other young people live. We assume they are independent and paying their own rent.  This person’s question is a reminder that I am not understood as quite human.

  

This leads to my second irritation about answering disability related questions and how it relates to Heist Moss article. Much like how her experience of harassment by men makes manifest that we live in a sexist rape drive culture where women still struggle for respect; the fact that it is novel to the general population I can drive or live by myself makes manifest we still live in an ablest cultural where being disabled causes someone’s capacity to be human and do “everyday things” is still questioned.  This cultural confusion that disability somehow negates or blurs personhood is the thing I would say I struggle with the most as a disabled person. This far out ways any bodily limitation I may experience. I don’t want people to assume my friends are my care takers.  If I am out with a group of girl friends I want to be read as such. I often find myself doing things to assert my legitimacy as a person and worrying that people are or are not perceiving me as such.

It is a mix of this concern over not being seen as fully human and thinking about the context of disability related questions. That led me to really appreciate the article: “How to Talk to a Normal: A guide for the rest of us”  by  Rachel Cohen-Rottenberg. Here’s the link again: http://www.disabilityandrepresentation.com/2013/01/28/how-to-talk-to-normal-people-a-guide-for-the-rest-of-us/

Cohen-Rottenberg’s article is a satire flipping the script so to speak. Her writing imagines what would happen if we approached those we read as “normal” non-disabled in the same way we as a society approach disabled people. I really like her writing because it is a playful commentary that highlights how we must remind the general population of the humanness of people with disabilities. It illustrates the absurdity of this odd gap between disability and the human condition. Further to that Cohen-Rottenberg’s whole blog is a great collection of pieces on disability and representation, much of it subversive humor.

I am grateful to both of these authors and Jo for providing me with an opportunity to think about my interactions with people and my disability.

Thank you