What is it like to live with a disability?

Leslie talks about changing her perspective on being disabled.

Transcript

Growing up, I really wanted to be "normal" . My hearing loss was not discussed or celebrated, of course, and I learned through both societal and family reinforcement that my disability is something that would be best not to focus on.  And then I can succeed in spite of, but not because of my disability and that's largely shaped how I live the first 2-3 decades of my life.  But recently I spent the past few months getting curious about and basing my disability and my identity as a disabled person.  I started to question if it's actually possible for me to shift how I view my disability from something that's a loss and a challenge and something that excludes me or makes me less desirable and more difficult.  And to something that maybe is a gift or an opportunity, and it gives me access to a life that I wouldn't have otherwise.  I know that when disability gives me access to such a deep empathy for others it gives me more understanding and more patience, for others' differences and needs.  But I didn't really put a finger on this, until recently, when I had a conversation with a friend.  She said something along the lines of "you're so tolerant" and I was like "what is that? Is that a good thing?"  And it's just that I'm understanding of people's needs and differences that people come from different viewpoints have different experiences and remaining aware of that and taking it into account and letting people be where they're at.  It's really hard to see myself clearly, I think, just as a human in this world, because of all of them, media and society pressure.  But I think, especially as a disabled person, because for so long, society has been telling me that I'm supposed to hide and change and conform myself because of have received dysfunction.  That there's something inherently wrong with me and flawed as a term disability and it can't really get more negative than that.  But having someone that I really value put to work a part of my identity that informed through living out the disabled person, something that I really take pride in and appreciate.  It's opened up the door to shifting the way that I perceived my disability.  It's like I have this capability and not in spite of my experience of living as a disabled person, but because of my experience of living as a disabled person.  So that's what I've been working on fixing my perception of who I am and challenging myself to live as maybe even a radically proud to stable person, but the fact that a disabled person loving their disability feels radical says a lot about where we are.  Like what's the climate of a disabled person loving their disability as radical.  And why for so long have I accepted that I can only feel shame around this part of my identity, why is that such a thing that I've accepted I know I'm not giving myself with that viewpoint and I'm definitely not lifting up anyone else, either.  But instead I've been asking what would it look like to be proud of this part of my identity, even in the face of a very stark global culture of ableism. I don't exactly know the answer to that, but I'm hoping that I'll figure it out.  Because ableism is basically the fact that disabled humans are an afterthought, that the wild have not created with us in mind.  Which is really interesting because I read a statistic one time that about one in four Americans are disabled, yet we're often left out of all of the ISM conversations.  And in this way ableism dehumanizing almost 70 million people really quickly, but I see a really big opportunity here because  Yes, my disability is often large bring on the road, I do wear hearing aids and, yes, sometimes I talked with the lisp for people will make really offensive rude comments about the way I speak, or about me not hearing things by a lot of times my disability goes unnoticed.  So I have such a good opportunity to be here to have a conversation that says hey I'm here, you may not have noticed, you may not think of me but I'm here as a disabled person, and I also deserve a seat at the table.  And not going to look, however, it looks maybe it's asking for captions or I think there's someone to repeat themselves or speak louder or asking to get a better seat and an auditorium or yeah asking for someone to put in extra work for me and asking for a lot and owning it.  This is definitely going to lead to discomfort and awkward situations, but the discomfort that I'm going to feel in myself as I begin to draw attention to something society has told me to hide.  And the discomfort that I placed on others when I asked them to do better, and when I reflect back to them where maybe they're not doing everything that they could but that discomfort feels necessary, I want to honor that thought Okay, I met discomfort often leads to growth.  A lot of the scariest things they've ever done in my life have been more rewarding and life changing and it's that discomfort that leads to that.  So yeah maybe I can't shift worldwide ableist prejudice but there's still a lot that I can do with owning and celebrating my story and starting with making my story heard, who knows who I can free and who knows who I can support.  Who knows who I can stand for, but I think it's about time I started standing for myself at the very least.