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Restarting the “Cool Cats: Voices from the Disability Community”, in which people with disabilities are featured. The point of this is to share different slices of different lives. For people to hopefully connect over shared voices, experiences or disabilities.

Please welcome Eliza Riley!


Getting to Know You

Your name:  Eliza Riley

What’s your connection with disability? 

I was born with a disability, Cerebral Palsy. Or it might not be – I have never gotten the official word.

Star Trek or Star Wars? 

None of the above

If you could live in any other country for 2 years, where would you go?

I would say let’s go to Ireland! I want to see where my ancestors lived, I want to thank them for the Irish humor and the grace of a true woman.

What dish would your bring to our community picnic potluck?

My famous Banana Bread made in a crockpot, oh the cooking lessons we learn in life. Crockpot is your best friend.

Now That We’ve Been Introduced…

What do you do:

I work in development at a local high school. I specialize in alumni activities

How did you come to doing what you do? How has your career trajectory flowed?

With a degree in theater arts I felt ready to take on the world, lol. I took a bit of time to just devote myself the stage, only to realize that I needed more out of life.

So what is a girl to do with a degree in theater arts? I started to work at an employment agency that specialized in working with people with disabilities. It was an interesting job and got me looking into disability advocacy as an employment path.

I then signed on for a year with AmeriCorps. This was very meaningful to me. I spent the year working at the volunteer center of Silicon Valley where I worked with Santa Clara County Collaborating Agencies’ Disaster Relief Effort (CADRE).

One of the primary goals of CADRE was to create a support system to better serve the many vulnerable populations in Santa Clara County and create a system to organize the different types of CBOs who may help with response and recovery in a disaster.  I then was able to put on an emergency conference by and for people with disabilities.

It was the first of its kind, where we took conference materials and geared them strictly towards people with disabilities. I then transitioned to work at CONNECT Job Seeker Center. I was able to work with people with disabilities as they looked for work, advising them on what questions to ask, when to disclose and other employment related questions.

During this time I was able to serve on Silicon Valley Independent Living Center’s (SVILC) Board of Directors. This position let me take a closer look at disability advocacy as a movement. I was eventually hired on as a Youth Leadership and Outreach Coordinator. I enjoyed this position as it let me increase my ability to connect with a broader audience.

I was also able to be an ambassador for Abilities Expo, San Jose show. This opportunity allowed me to recruit both audience members and possible exhibitors. I then was able to work for College of Adaptive Arts as an office manager and registrar.  This position allowed me to experience the birth of a brand new organization and the celebration that the arts brings to a community.

I now work for my old high school, Saint Lawrence Academy as where I am able to hone my fundraising skills. I would say looking back at it, that I was given many invaluable tools that I will continue to put to use in my everyday activities.

Where would you like to see yourself in 5 years?

That is a very good question. In five years I would like to see myself still living in my own house, still having the drive to get up and work. I want to get back to swimming and eventually walking again. I will spend time exploring the world of art and that piece of me I lost, most importantly still advocating for myself, victims of abuse, and people with disabilities.

Not to be morbid, but what do you want people to remember about you when you’ve gone?

Above all that I had a wicked sense of humor. “Life is shit, you get over it, then you die” Most of my story is here.

Who or what inspires you?

I would say that would be my mom, Mary Beth Riley. She lives such a great life. Being a mom of a disabled female was tricky. What were you supposed to do? She let herself get caught up in the world of CP. She successfully managed to balance being with me for every step and keep a good grasp of her career. She is now a principal of Notre Dame High School, San Jose and still have time to laugh and live life. I always strive to follow her example in life, love and the pursuit of happiness.

About Disability

If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?

Get over it, there is so much that you are not going to know, ever.

Science and doctors will be absolutely no help and you just need to consider yourself a medical mystery. Relax about it, it is a problem that you just cannot solve. Go and solve some real issues!

What do you like about your particular disability?

That is a rather tricky question. I like the sense of self it has given me. The sense that you just never know, what have you really got to lose? I like the listening capabilities it has given me. Somehow I am able to talk to people and have no fear of exposing too much or coming off harsh.

Any one thing that you wish people would *get* about disability?

Nothing really, I’m just like everyone else it is just I have been waking up with this exciting notion that using a wheelchair would make life so much easier.

What single piece of technology makes your life easier?

That would have to be my bed, it is a Tempur-pedic massager. There is nothing like coming home after a days work and get a full body massage.

elizaWhere else can we find you online?

https://www.facebook.com/Eliza.Riley

http://redefiningdisabled.org/eliza/

 

 


 

If you would like to share your Voice, please send me an email (meriahnichols@gmail.com)

Guest posts are also welcome. Please read this, thank you.

 

 

I don’t know if you remember that video that going viral earlier this year, with the boy with “special needs” who handed the basketball? I don’t know if you remember the uproar that came on its heels, and the blog post which flew through disability circuits with the clearest, strongest, most resonating message which represented the majority of the disability community? The post was called, “The Dignity of Loss” – and if you haven’t read it yet, just click on the link. It’s wonderful and powerful and rings true.

It took me a while to track down Cara Liebowitz as That Crazy Crippled Chick! I’m sure glad I was able to, though, so that I could introduce you to her and her most awesome blog.

Please meet Cara 🙂

******************

Getting to Know You

Your name: Cara Liebowitz, known as Spaz Girl on my blog and in various other online circles.


What’s your connection with disability?

I’ve had cerebral palsy since birth (I was diagnosed around a year old), and I was diagnosed with an anxiety disorder about two and a half years ago.  So I spend my days navigating through the world of disability on a few levels.

 

Star Trek or Star Wars?

STAR TREK STAR TREK STAR TREK STAR TREK.  Anyone who knows me knows that I’m a HUGE Trekkie.  I went to my first Star Trek convention back in April and I can’t wait til I can go again!


If you could live in any other country for 2 years, where would you go?

Probably England.  I have a lot of friends that are from there and it seems like a nice place to be.  Plus the NHS pays for mobility aids and things.

 

What dish would your bring to our community picnic potluck?

Uhhh, do I have to cook it?  Cooking isn’t really CP friendly.  Most kitchen appliances terrify me.  Probably something dessert-y.  I have a HUGE sweet tooth.


Now That We’ve Been Introduced…

What do you do:

I’m a recent college graduate with a Bachelor’s of Science in Education (somehow, without realizing it, I got done in three years).  I aim to continue on to grad school and get my Master’s degree in Disability Studies.  I am also a disability activist and blogger, active in a lot of different things both nationally and locally in the NYC area.  Currently I’m a professional blogger for Teaching Tolerance (http://www.tolerance.org), a magazine and blog about diversity in the classroom.  I also run the You Know You Have CP When group on Facebook (https://www.facebook.com/groups/139973096090322/).  Recently, I co-founded “Stomp Out Normalcy”, a satirical campaign aiming to make people think critically about the perceptions of disability that are put out there.


How did you come to doing what you do? How has your career trajectory flowed?

I was always an activist, from a young age.  Part of that stems from the fact that my parents never tried to hide my disability from me.  I could pronounce the words “cerebral palsy, spastic diplegia” at a very young age and my mother tells me she told me what my diagnosis was as soon as she knew, even though I was only a year old at the time and could not walk or talk yet. 

As a child of the information age, I started posting on an online messageboard for kids with CP around the age of 8 and quickly discovered the joy of helping parents of children of CP understand what CP’s all about. I started Googling around, “leapfrogging” from website to website, blog to blog, soaking up all I could about disability culture, disability history.  I’d spend hours on the computer just clicking around and reading.  I learned about our pioneers in the movement – Ed Roberts, Justin Dart, Judy Heumann, Amanda Baggs….I learned about the concept of disability pride and the Chicago disability pride parade….I couldn’t get enough. 

I started posting on the BBC Ouch disability messageboards, I was probably the youngest contributor on there for a long time and I learned a lot from the adults that posted on there, some of whom I’m still in touch with.  At age 13 I started my own website dedicated to providing clear, understandable information about disabilities (you can still access it at http://www.abilities4u.com, though it’s no longer being updated and my politics surrounding disability have changed significantly).  That led to an article in the newspaper, then a segment on News 12’s “Students Making a Difference”….and it just took off from there!  My first national activism effort was a National Youth Inclusion Summit where we developed the I Am Norm campaign for inclusion (http://www.iamnorm.org).

Disability activism was, and still is, my drug.  I’m addicted and I can’t think of anything I’d rather spend my life doing.


Where would you like to see yourself in 5 years?

I’d like to be working for some sort of disability organization or cause, hopefully still in the NY area (I’m a homebody).  I’d also like to establish my own nonprofit mentoring program pairing up kids, teens and young adults with similar disabilities.


Not to be morbid, but what do you want people to remember about you when you’ve gone?

I want people to remember me as a leader and an activist.  I want people to remember who I was and what I did and to look up to me the way I look up to leaders in the movement.


Who or what inspires you?

Leaders who have come before me in the disability rights movement inspire me.  Not in the “inspiration porn” sort of way, but in the “Wow, I want to be like them” sort of way.  Especially strong female disability leaders – I recently met Nadina LaSpina and was practically speechless, and I was the same way when I met Judy Heumann a few years ago.

About Disability

If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?

There are other people like you out there.  I promise.  I know it doesn’t feel like it, because you’ve always gone to mainstream school and been surrounded by nondisabled kids, but there are other people like you and soon you’ll find so many of them. 


What do you like about your particular disability?

About my CP?  It’s wonderfully complicated.  And that frustrates me sometimes, because people only see one part of it.  But it also makes for a lot of humorous moments, like when I spill juice all over the table like a toddler because my hands aren’t coordinated.  Or when I fall on my face in the airport.  It gets to a point where you just have to laugh.  My sense of humor is absolutely necessary for my survival.

As for my anxiety….nope, can’t think of anything I like about my anxiety.  I guess if I had to pick something it’d be that it’s given me a new drive to speak out about mental illness, like I speak out about my CP, and advocate for psychiatric medication for those who want and need it.


Any one thing that you wish people would *get* about disability?

Disability is a natural part of the human experience, like race, gender and sexuality.  Most of us (not all of us by any means) consider our disabilities an irremovable part of ourselves and do not want to be cured.  People don’t understand why we wouldn’t want to be cured, but what if we tried to “cure” race, because we believe that whiteness is the norm, for instance?  It’s the same concept and just as offensive.


What single piece of technology makes your life easier?

My computer.  I was taught to type at the age of eight by a savvy occupational therapist who realized that, as a disabled person who experiences pain and fatigue after writing even just a few sentences, typing would be crucial to my success in the world.  If I hadn’t learned how to type, I don’t know if I would have made it through high school.  Certainly not college.  And since I don’t drive due to my disability (though I’m working on it), and public transportation is sometimes unreliable and costs money that I don’t have, I spend most of my days now home on my computer.  My computer is how I make money, socialize with people, and keep up on what’s happening in the world (to an extent).  If I didn’t have my computer, I would be lost.


*************************************

Where else can we find you online?

Oh, all over.

Twitter: @spazgirl11

We Are Like Your Child Collaborative Blog:  wearelikeyourchild.blogspot.com

Stomp Out Normalcy website (you can access our Facebook page and Twitter feed from there):  http://www.stompoutnormalcy.wordpress.com

Bubblews profile (a site that pays you to blog, 400 minimum character posts – it splits the ad revenue with you and you can cash out when you hit $25 – I highly, highly recommend it!):  http://www.bubblews.com/account/43914-thatcrazycrippledchick

Bubblews referral link (people can sign up using my referral link and I get 20 cents when they blog for the first time): http://www.bubblews.com/?referral=51b5541d9d1cb0.25896264

Tumblr:  http://www.flutterflyinvasion.tumblr.com

Teaching Tolerance author page:  http://www.tolerance.org/author/cara-liebowitz (My bio is a bit outdated on there.)

Did I miss anything?  I don’t think I missed anything.  It’s hard to keep track!

Website:  My blog is called That Crazy Crippled Chick – http://www.thatcrazycrippledchick.blogspot.com

cara

 

Getting to Know You

  1. Your name:

Sandy Ho

  1. What’s your connection with disability?

My connection with disability began at birth, with Osteogenesis Imperfecta (O.I.). Then as I grew older I began reaching out to others who also have O.I. and started a blog called Perfectly Imperfecta from 2011 – 2013.

I recognized that there were lots of blogs from parents of children with O.I. who used blogging as a way to update others & track their kids development, and also bloggers who were young teens with O.I. who used it to vent their frustrations that come with being disabled. So I began Perfectly Imperfecta as a way to write from the perspective of a 20-something adult who could be reflective about my own childhood and adolescent experiences of having O.I.

My entries ranged from those having to do with family (and being the only representative of disability in my family), to entries on advocating for myself in a school system, and social experiences like being out in a club with my friends. From that personal blog I began to become more interested in the larger disability community — and for that I have my professional experiences at Easter Seals Massachusetts to thank!

Around 2012 I became the Thrive Program Coordinator and worked on developing and implementing a mentoring program for transitional-age disabled young women across the state of Massachusetts. This was an incredible professional experience both in learning how to run a youth program, and put together an invigorating conference as well – but it was also a fast-tracked course in learning about working within the disability community.

The Thrive Program conference gave me a platform to learn and work with young women around things like: access to birth control, sexual health, access to preventative healthcare, body-image and fashion, and just learning how other successful disabled women have been able to lead kick-ass lives while pushing this disability rights movement forward! Since then I am now working on some personal projects like this summit I’m convening around disability and intersectionality which I’m so ecstatic about, but I’ll leave the rest as a surprise…. until my next update!

  1. Star Trek or Star Wars?

Star Trek!! There is a picture of me peddling my tricycle-spaceship around and around the house, and every time I got in trouble (which was often..) I’d press the button on my “spaceship” and try to get out of my mishaps with “Beam me up Scotty!”  

  1. If you could live in any other country for 2 years, where would you go?

Hmmm… Australia. Among lots of other reasons including all the awesome people I’ve met in my virtual-networking who are Australians that I’d like to meet.. they have a place called The Great Sandy Desert. I mean c’mon now, as someone who has a collection of sand samples from all around the world — how could I not?!

  1. What dish would your bring to our community picnic potluck?

Ice cream and ice cream sundae toppings! My love for ice cream is insatiable.

Now That We’ve Been Introduced…

  1. What do you do:

So as I’ve mentioned earlier, I’m currently working on putting together a Disability & Intersectionality Summit that’s being spearheaded by the Disability Policy Consortium. The need for this event sprang on me when I realized there was a lack of diverse representation when we talk about disability policies, and disability civil rights.

There isn’t enough dialogue that utilizes and reaches out to those of us in the community who are people of color, or are LGBTQ, or have invisible disabilities, and mental illness. As someone who is able to look at the disability community and the organizations that work within it, I see that there’s a ton of talk about collaborating and pushing a movement together – but usually that’s all I see, talk.

I don’t actually hear the talk, or see people being brought together and my attention with this summit is for us to learn from each other because we forget that while we’re so busy trying to change the perceptions of mainstream society and those stereotypes – we can’t really be successful at that until we’ve listened to what our own members are saying, and recognize what the need is before we go charging off to lead the battle!

Also, this past November I began writing a novel that features a protagonist who is a wheelchair-user. Her story is as much her own, my own, and her narrative has many of the same traits to it as those of the other disabled women I have had the honor of listening to. But that’s really all I can say about the story for now!

  1. How did you come to doing what you do? How has your career trajectory flowed?

I certainly didn’t come to do what I do with open arms and the same enthusiasm that I have now, that’s for sure! I grew-up believing that I could pass for being able-bodied in my mind. I wanted nothing more than to blend in, be like everyone else, and took an attitude of: “I’ll deal with my disability as I go whenever it’s a problem.”

I relied on my academics, my personality, and this inherent belief that I was the one who would always have to accommodate and adapt to everything else.

If you had asked me even 5-7 years ago whether or not I would have seen myself doing AmeriCorps and working with community college students, then working with disabled women, being able to speak at the White House for the 25th Anniversary of the ADA, creating a website for women internationally to submit letters, or becoming more involved in the disability rights community in my spare time – I would have laughed. Because it wasn’t until 3 years ago that I actually became involved, and stopped actively trying to “pass” as able-bodied, and started to actively live as I am.

It’s been a learning process for sure, and there are lots of days when I have no clue what I’m doing but I would say that my career trajectory has primarily been led by these three questions:

A.) Am I building new skills, and pushing the ones I already have?

B.) Am I having a positive impact on a community, or group of people?

C.) Am I still able to see the end goal as I’m working? Or is the work that I’m doing just adding to the noise?

I was never someone who went to school, got my degrees, and said “ok, now I’m going to be This Professional Licensed Person for the rest of my life.” My career trajectory is more skill-building based, and of course driven a lot by my own curiosity and passions.

  1. Where would you like to see yourself in 5 years?

In 5 years? I would like to still be working with communities of people whether they’re communities of immigrants, disabled people, or disabled youth. I want to translate the community work that I have been given the privilege of doing, and deliver it to that next level of creating policies.

Will that happen in 5 years? I’m not sure! But I’m gonna try like hell to make it happen! I also see myself in Washington D.C. within five years. Because, it’s D.C.

  1. Not to be morbid, but what do you want people to remember about you when you’ve gone?

I hope that people would remember me as someone who was enthusiastic, genuine, and curious – oh, and loved ice cream.

  1. Who or what inspires you?

Harilyn Rousso; her memoir Don’t Call Me Inspirational: A Disabled Feminist Talks Back had a tremendous impact on my work with the mentoring program, but also in shaping the ideas I have about being a disabled woman. Also, my two brothers who I might not always understand but I have come to find sibling rivalry is such a loving force.

About Disability

  1. If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?

Geez I’d already written and submitted my letter to my younger self as a freshman in high school… but I’d say to myself let your curiosity get the better of your fears. And don’t be afraid to own up to not knowing something in a position of leadership. It actually has the opposite effect you are worried about having, and will allow you to have trust and access in ways that will make you a better leader.

  1. What do you like about your particular disability?

As a predominant wheelchair-user I can talk myself into buying shoes by saying “it’s a great investment because they’ll last me for the rest of my life…”

  1. Any one thing that you wish people would *get* about disability?

We’re humans.

  1. What single piece of technology makes your life easier?

My power wheelchair Permobil C300, but also by that same measure my TiLite Aero Z because I’m able to hop in to my friends’ cars and homes that may not be accessible with an electric wheelchair. Also my Macbook Air, yea I’m a mac person I said it.

and…

  • Where else can we find you online?

Letterstothrive.tumblr.com (- Letters written by women with disabilities to their younger selves)

Perfectlyimperfecta.blogspot.com (- blog)

…and we are baaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaack!!! I’m super happy to be rolling again with the Cool Cat series. I missed it last week.

Today I am delighted to introduce you to David Roche, who is a friend of my dear friend, Liane Yasumoto. His responses had me laughing out loud and I’ve just purchased his book The Church of 80% Sincerity, because he is hilarious and I need something funny to read. And it’s $6.99 on kindle (Book Club: I’m going to add it to our wall for consideration for a monthly read!).

Please enjoy. David Roche.

********

Getting to Know You

Your name: David G. Roche
What’s your connection with disability? I am a good example of the social model of disability. I was born with a facial difference (a vascular anomaly) that was enhanced by surgery and radiation therapy when I was a one year old in 1945. I am from the generation of denial and never knew what I “had” as a child. I have dysfunction in swallowing, breathing and sleeping but none of the traditional disability “markers.” But because of my appearance I am judged as disabled. Hence the social model.
Star Trek or Star Wars? Both, please.
If you could live in any other country for 2 years, where would you go? Portlandia.
What dish would your bring to our community picnic potluck? Waffles.

Now That We’ve Been Introduced…

 

What do you do: I call myself an inspirational humorist. (OK, people might not like the inspirational part. More about that below.) I work as a keynote speaker, a solo performer, actor, comedian, storyteller and storyteller coach.
How did you come to doing what you do? How has your career trajectory flowed?

I found my soul mate Marlena when I was 44. Our relationship was complicated (i.e., she was married to someone else). From time to time in the early part of our relationship, I would wonder what exactly I was doing.

 

At one of those times I decided I needed to follow my own path. I took a comedy class. I had never done anything like that before. In addition, I had never talked about my face, even to the extent that after six months of us being lovers, Marlena did not know what had happened to my face. True denial.

 

I took to comedy and I began talking about my face. At first I was self-deprecating. Audiences did not like that, but they liked everything else. I was off and running. My first comedy appearance was at Romantasy, an erotic boutique in San Francisco.

I quit my day job in 1996, put up my signature one man show “The Church of 80% Sincerity” in San Francisco and since then have made a living on stage and at the podium.

It has been an intense personal and artistic journey because a lot of my material, especially in the early years, was about facial difference and being stared at. And there was an audience staring at me.

I found that if I called myself a keynote speaker I would make about three times as much money for doing my show.

I’d say now that I am kind of a symbolic persona. I love performing, especially being funny. I love teaching storytelling because everyone has an incredible story to tell. I love working with kids, especially in middle schools when they are trying to figure out who they are and what appearance has to do with it.

 

Now I find that, when I say that my face is a gift because I have been forced to find my inner beauty, kids will say, “Good for you, but how exactly do you do that?” So my artistic vision is to try to be part of answering that question through the David Roche School of Beauty, with the mission of redefining the world’s standards of beauty. I know that will involve social media.

 

And yes, I am inspirational. I can live with that. Yes, there are negative aspects to that. But it is not the only thing about me. It took me a long time to realize that everyone needs inspiration, including myself.

 

For me, it was sports figures when I was a kid. Now it is often performers with disabilities who inspire me (sorry! sorry!). People like Sandie Yi, Mat Fraser, Julie McNamara, Liane Yasumoto, Judith Smith, Leroy Moore and many, many others. I cannot do without their example. So there you go.

Where would you like to see yourself in 5 years? I would like to have the David Roche School of Beauty operational.

Not to be morbid, but what do you want people to remember about you when you’ve gone?

What I want on my tombstone: “He encouraged people.”

Who or what inspires you? See above.

About Disability

If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?

David, your face is unique but your experience is universal. Everyone feels that they are disfigured in some way. Many people feel it is about appearance. Others feel they are evil sinners, or fat, or dumb or have bad karma.

(But I do not think I would have listened to myself.)

What do you like about your particular disability?

After I learned to see myself as a person of value, as beautiful, the door opened for me to see the beauty of other people. Even when they are flawed in all sorts of ways. I can’t tell you how wonderful a gift that has been for me.

Any one thing that you wish people would *get* about disability?

People with “disabilities” are not victims. We are not survivors. We are teachers and leaders who understand a great deal about the human condition and have a lot to bring to the world. And we are doing so.

What single piece of technology makes your life easier? The waffle iron.

David performing his show "Catholic Erotica (Be Proud of Your Shame) at the DaDaFest in Liverpool last year. Credit: Mark McNulty
David performing his show “Catholic Erotica (Be Proud of Your Shame) at the DaDaFest in Liverpool last year. Credit: Mark McNulty

Where else can we find you online? FaceBook, YouTube

Website:www.davidroche.com

Don’t Forget! His book!

The paperback edition of his book,  The Church of 80% Sincerity, published originally by Penguin, is now available on everything: Amazon, iTunes, Nook and Kindle. Yay!

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