Awesome video as always. While watching I realize that I tend to curse more when I'm around my ablebodied friends in an attempt to seem cooler and I use a more scholarly vocab in class in order to be taken seriously by teachers. That being said, although i've had CP my entire life, I'm still working through my complicated feelings of resentment towards my disability. Your videos and your sense of disability pride helps with that.
because I am autistic I am used to being different around different people, its my masking. But I also developed a chronic pain disorder in adulthood which has made it harder for me to mask, so now I am not as good at adjusting to my space or being "a good disabled person" around "normal" people.
I wrote my undergrad dissertation on disabled performers. I studied performance art, and as a disabled performer I was very aware of 'performing' my impairment every time I go onto stage. I wasn't deliberately performing this, but when you move onto stage you highlight all aspects of your social identity. With a visible impairment, that 'performance' bleeds out of the stage space. Your social identity as a disabled person is outwidth the assumed 'norm' and unless you find a 'niche' to fit into in society you wont be able to interact in a manner that is satisfactory- often times disabled folk fall into stereotypes to aid an easier understanding of identity to able bodied folks. I find myself often falling into the 'funny' or 'clever' one so as to soften the blow of 'young guy in a wheelchair' - around other disabled people, I find myself moving more to demonstrations of radical politics. All identity is performed, I just think that when you're disabled you become so aware of what's deemed normal and abnormal, that you become aware of your own behavioural changes to try and fit into these categories. Sometimes I wonder if that's part of the discomfort, disability is a walking/rolling/crutching fourth wall break- it forces the observer to in some manner consider the social structure which they reside in. I wouldn't take a cure - not because of an erasure of sense of self, although that is a thing. I just don't see why my experience is of such low validity, or so tragic, that I need one. My disability isn't necessarily in my impairments, it's oftentimes in the infrastructure that makes those impairments problematic i.e. stairs, lack of social support etc. Cure that, don't cure me.
That’s true on what you said there Robyn, I can definitely relate to that for sure! I do often wonder if people with cp is more unique and quirkier than able bodied people, like a brilliant sense of humour, have strong views and fight to get what they need.... I for one I do get what I need and fight for it.... Be Bold, Fight & Never Give Up.
Awesome thoughts and video! I guess my add-on would be: while it is extremely healthy for people in marginalized groups to be out, proud, radical and earth-shaking, I also think that everyone needs to also be true to themselves, and not only present in ways just to stand out or to counter how people might think of them. Let’s not get so obsessed with how other people think of us to the point where everything we do, wear, or say is a reaction to counter others’ narratives. For instance, I have CP, I’m gay, I’m Jewish and I have anxiety. While it’s important for me to be proud, bold and unapologetic about who I am, I also don’t want to get into a mental space where *everything* I do and say is for the sake of non-minority people who might have pitying thoughts about me or discriminate against me. I just want to be me and do what feels good and right, regardless of my identity or anyone else’s identities. Anyway, great thoughts! Looking forward to more! :)
Oh my gosh. What you said about trying to figure out the line between your disability and your personality being blurred. For me, I was 15 when I became disabled, after an accident and I can't really clearly think or remember how life was before somehow. And things can't really change. I am learning to accept this new and different life and I don't feel it's a bad thing. It's painful and challenging and often difficult, but everyone has struggles. I can be sad about what happened, but also grateful and excited for the life I have now! It's so strange because growing up, It's difficult to distinguish what is 'normal' A person is so different when they are 15 compared to 22. So my experience as a disabled person has shaped a lot of how I am, as a person if that makes sense. I don't know who I would be without my disability. I feel there is sometimes a pressure to be some sort of activist, and to present myself as me and show that I am me with a disability and it doesn't hold me back. Often it feels like, if the world were kinder, more aware,more accessible. Then disability wouldn't be a problem. When I feel angry about my situation (I do sometimes) I need to think because I'm not usually angry at my disability, sure I could do without the pain but more often than not, I'm frustrated with lack of access or the way I am being treated by others. This is such an interesting video, sorry for a very muddled up response!
Thanks so much for your comment Roo, I always value your insight! You're teen years are very informative so I can totally understand how you would change and how disability would mould you in different ways. That's why I believe in the Social Model, brain damage isn't the problem, inaccessibility and negative perceptions are!
the beginning of your vid made me think of this talk by Bill Shannon : ua-cam.com/video/m8LK7A6o3iY/v-deo.html I don't know if you know it ? It really blew up my mind when I discovered it ! And then, the end of your vid and "what would happen if my situation was changing" echoed a lot with my experience of being trans, and how do I behave, now that I "pass" as a cis guy, not to betray my trans experience and identity. (And ending with a reference to David Bowie is always great !)
This made me consider both how I’ve experienced this as a person with an invisible disability and as a minority. I grew up Jewish in a mostly Christian or secular area. I’ve been more involved in my community recently and I’ve noticed I present differently in Jewish spaces. I don’t keep my identity caged there, my accent even changes, it’s weird
I wish I had this platform when I was your age. I'm 45. I noticed that I usually fall into both of any extreme when it comes to being labeled as something [forgive the pun]. For example, I was told I was being arrogant by someone and another person who heard it told me that I was far from arrogant, I only knew certain things that the person who called me arrogant didn't. Another example is being told that I must accept that I have cp by a member of the church but then here comes another person who wants to pray for me to pray [cp] away. I've said that I've lived with cp for 45 years, I've had 45 years of life with cp, I've had many experiences with people who do and do not accept the cp. There are some people who will be people who accept me as I am and those who do not and still those who do tend to think that I still need to accept it. I can't win either way I have either accepted and called arrogant or displaying a false sense of confidence or I don't accept it and I must be helped; forget that I have an education, I have a business, I have a car and drive, I have a house with a pool and I pay my bills including insurance and taxes and somehow I still don't have confidence? somehow I still don't contribute?
I accepted the fact that I don't display the expected personality of someone with a disability many years ago before I graduated college and started my own business. It's a pioneering way of life depending on the local societal & cultural expectations; it's a hard life however, if it comes too easy, it's not worth as much to go through hardships so the next generation won't have as much. You're my next gen; I sincerely hope your generation doesn't have the pre-internet persecutions, hardships, struggles we did.
![Disability is Ambiguous...[CC]](http://i.ytimg.com/vi/PhpnWPOIfMM/mqdefault.jpg)
![Disability is Ambiguous...[CC]](/img/tr.png)
Awesome video as always. While watching I realize that I tend to curse more when I'm around my ablebodied friends in an attempt to seem cooler and I use a more scholarly vocab in class in order to be taken seriously by teachers. That being said, although i've had CP my entire life, I'm still working through my complicated feelings of resentment towards my disability. Your videos and your sense of disability pride helps with that.
because I am autistic I am used to being different around different people, its my masking. But I also developed a chronic pain disorder in adulthood which has made it harder for me to mask, so now I am not as good at adjusting to my space or being "a good disabled person" around "normal" people.
you're always so eloquent! thanks for sharing this!!
Keep Inspiring, Love it!
I wrote my undergrad dissertation on disabled performers. I studied performance art, and as a disabled performer I was very aware of 'performing' my impairment every time I go onto stage. I wasn't deliberately performing this, but when you move onto stage you highlight all aspects of your social identity. With a visible impairment, that 'performance' bleeds out of the stage space.
Your social identity as a disabled person is outwidth the assumed 'norm' and unless you find a 'niche' to fit into in society you wont be able to interact in a manner that is satisfactory- often times disabled folk fall into stereotypes to aid an easier understanding of identity to able bodied folks. I find myself often falling into the 'funny' or 'clever' one so as to soften the blow of 'young guy in a wheelchair' - around other disabled people, I find myself moving more to demonstrations of radical politics.
All identity is performed, I just think that when you're disabled you become so aware of what's deemed normal and abnormal, that you become aware of your own behavioural changes to try and fit into these categories. Sometimes I wonder if that's part of the discomfort, disability is a walking/rolling/crutching fourth wall break- it forces the observer to in some manner consider the social structure which they reside in.
I wouldn't take a cure - not because of an erasure of sense of self, although that is a thing. I just don't see why my experience is of such low validity, or so tragic, that I need one. My disability isn't necessarily in my impairments, it's oftentimes in the infrastructure that makes those impairments problematic i.e. stairs, lack of social support etc. Cure that, don't cure me.
Wow so true! Completely agree with everything you have stated, would love to read your paper!
Emailed you with a link!
Have I ever told you that you are so smart? Well, you are absolutely brilliant!
Thank you!
That’s true on what you said there Robyn, I can definitely relate to that for sure! I do often wonder if people with cp is more unique and quirkier than able bodied people, like a brilliant sense of humour, have strong views and fight to get what they need.... I for one I do get what I need and fight for it.... Be Bold, Fight & Never Give Up.
Hell yeah!
Awesome thoughts and video! I guess my add-on would be: while it is extremely healthy for people in marginalized groups to be out, proud, radical and earth-shaking, I also think that everyone needs to also be true to themselves, and not only present in ways just to stand out or to counter how people might think of them. Let’s not get so obsessed with how other people think of us to the point where everything we do, wear, or say is a reaction to counter others’ narratives. For instance, I have CP, I’m gay, I’m Jewish and I have anxiety. While it’s important for me to be proud, bold and unapologetic about who I am, I also don’t want to get into a mental space where *everything* I do and say is for the sake of non-minority people who might have pitying thoughts about me or discriminate against me. I just want to be me and do what feels good and right, regardless of my identity or anyone else’s identities. Anyway, great thoughts! Looking forward to more! :)
Ahh totally agree, I guess anything in extremes is unhealthy. It's all just a consideration.
I have cerebral palsy as well!!!!!! awesome video
Thank you!
Awesome video Robyn:)
Thank you!
Oh my gosh. What you said about trying to figure out the line between your disability and your personality being blurred. For me, I was 15 when I became disabled, after an accident and I can't really clearly think or remember how life was before somehow. And things can't really change. I am learning to accept this new and different life and I don't feel it's a bad thing. It's painful and challenging and often difficult, but everyone has struggles. I can be sad about what happened, but also grateful and excited for the life I have now!
It's so strange because growing up, It's difficult to distinguish what is 'normal'
A person is so different when they are 15 compared to 22. So my experience as a disabled person has shaped a lot of how I am, as a person if that makes sense. I don't know who I would be without my disability.
I feel there is sometimes a pressure to be some sort of activist, and to present myself as me and show that I am me with a disability and it doesn't hold me back. Often it feels like, if the world were kinder, more aware,more accessible. Then disability wouldn't be a problem. When I feel angry about my situation (I do sometimes) I need to think because I'm not usually angry at my disability, sure I could do without the pain but more often than not, I'm frustrated with lack of access or the way I am being treated by others.
This is such an interesting video, sorry for a very muddled up response!
Thanks so much for your comment Roo, I always value your insight! You're teen years are very informative so I can totally understand how you would change and how disability would mould you in different ways. That's why I believe in the Social Model, brain damage isn't the problem, inaccessibility and negative perceptions are!
the beginning of your vid made me think of this talk by Bill Shannon : ua-cam.com/video/m8LK7A6o3iY/v-deo.html
I don't know if you know it ? It really blew up my mind when I discovered it ! And then, the end of your vid and "what would happen if my situation was changing" echoed a lot with my experience of being trans, and how do I behave, now that I "pass" as a cis guy, not to betray my trans experience and identity.
(And ending with a reference to David Bowie is always great !)
This made me consider both how I’ve experienced this as a person with an invisible disability and as a minority. I grew up Jewish in a mostly Christian or secular area. I’ve been more involved in my community recently and I’ve noticed I present differently in Jewish spaces. I don’t keep my identity caged there, my accent even changes, it’s weird
I wish I had this platform when I was your age. I'm 45. I noticed that I usually fall into both of any extreme when it comes to being labeled as something [forgive the pun]. For example, I was told I was being arrogant by someone and another person who heard it told me that I was far from arrogant, I only knew certain things that the person who called me arrogant didn't. Another example is being told that I must accept that I have cp by a member of the church but then here comes another person who wants to pray for me to pray [cp] away. I've said that I've lived with cp for 45 years, I've had 45 years of life with cp, I've had many experiences with people who do and do not accept the cp. There are some people who will be people who accept me as I am and those who do not and still those who do tend to think that I still need to accept it. I can't win either way I have either accepted and called arrogant or displaying a false sense of confidence or I don't accept it and I must be helped; forget that I have an education, I have a business, I have a car and drive, I have a house with a pool and I pay my bills including insurance and taxes and somehow I still don't have confidence? somehow I still don't contribute?
So true!
I accepted the fact that I don't display the expected personality of someone with a disability many years ago before I graduated college and started my own business. It's a pioneering way of life depending on the local societal & cultural expectations; it's a hard life however, if it comes too easy, it's not worth as much to go through hardships so the next generation won't have as much. You're my next gen; I sincerely hope your generation doesn't have the pre-internet persecutions, hardships, struggles we did.