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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.

 

 

Getting to Know You

  1. Your name: Anne Finger
  2. What’s your connection with disability? Had polio as a young child, part of disability rights/justice/arts community.
  3. Star Trek or Star Wars? Star Trek (original series watched on black and white television in 1967)
  4. If you could live in any other country for 2 years, where would you go? Eritrea
  5. What dish would your bring to our community picnic potluck? brown rice salad from Moosewood Cookbook – it’s good, trust me

Now That We’ve Been Introduced…

  1. What do you do: writer
  2. How did you come to doing what you do? How has your career trajectory flowed? just plugged away and kept doing it
  3. Where would you like to see yourself in 5 years? still living
  4. Not to be morbid, but what do you want people to remember about you when you’ve gone? a good mother and friend and an accomplished writer
  5. Who or what inspires you? Anyone who fights for justice, in big and small ways. I like to think about the hundreds of thousands, millions of people who took part in the civil rights struggle, who were “ordinary,” not heroic, tired, cranky, angry, passionate and very heroic at the same time.

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? Your life will be so much easier once you start using a wheelchair.
  2. What do you like about your particular disability? I like the feistiness and sense of community being post-polio has given me.
  3. Any one thing that you wish people would *get* about disability? That it is an intrinsic part of human experience.
  4. What single piece of technology makes your life easier? My wheelchair.

and…

Where else can we find you online?

You could visit this site where I am named “Wanker of the Day” for my writing about disability and abortion. I somehow get a kick out of this. My son asked me what a “wanker” was, and I explained, “someone who masturbates.” He said, “So, is it good to be “wanker of the day”?

 

Books by Anne Finger:

 

I’ve been fortunate to know Rachel for a long time – since she was a student at Cal.

I feel like our friendship has been a gift in that we both mentored one another at a particular period. She mentored me in disability studies, giving me a place in which I could ask hard questions, talk about things that I was learning regarding disability rights/activism. She shared with me her extensive library – many of my current favorites were introduced to me by Rachel. 

Besides all the learning, I love Rachel. She’s funny, fun. A firecracker with style that I see too seldom.

Please meet Rachel Stewart.

***

 

Getting to Know You

1. Your name:  Rachel Stewart

2. What’s your connection with disability?

I was born with spinal muscular atrophy and have used a wheelchair since the age of 5.  It’s very much a part of who I am!

3. Star Trek or Star Wars?

Um… can I say neither??  I’m not one for sci fi, but give me a sappy drama or cooking show any day!

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

That’s a tough one, especially since the only time I’ve been out of the country has been to Tijuana for an evening (and I’ve been told that hardly counts as being to another country).   If accessibility weren’t a question, probably somewhere lush and tropical – Fiji or Thailand.  Taking accessibility into account, I’d love to check out England, France, Ireland, Australia, and New Zealand.  Sorry, hard to pick just one!

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

That’s a tough one… probably a quinoa or bulgur salad of some sort.

Now That We’ve Been Introduced…

1. What do you do:

I’m staff manager of the California Committee on Employment of People with Disabilities.  As part of that position, I also help to plan California’s Youth Leadership Forum for high school juniors and seniors with disabilities.

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

I’m lucky in that I’ve had a lot of great mentors and supporters in my past that pushed me beyond my comfort zone.  In college at UC Berkeley, I took a lot of disability studies classes and got really interested in the field.  One of my professors became a fantastic mentor (Dr. Mark Sherry) and he encouraged me to do an honors thesis, which gave me research experience to put on my resume.

When I was preparing to graduate college, my roommate at the time (ahem, Meriah) strongly encouraged me to interview for the Workforce Recruitment Program for college students with disabilities, and I was offered an internship (and later a job) at the US Dept of Labor’s Office of Disability Employment Policy.  I quickly realized that DC winters were not for me, and networked like crazy trying to figure out my next step.

Moving back to California, I found a grant-funded job working on work incentives and youth transition issues.  Stayed in that position for about 6 years, then networked again to find my current job.  So if there are two things that have gotten me to where I am today – it’s networking my butt off, and finding mentors in the field that helped guide me.

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

Personally, I’d like to be married and settled down with a kid or two.  Professionally, I’d really like to work for the Community College system.  I’d like to start off as a Disabled Students Programs and Services (DSPS) counselor, and then eventually a director.

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

Tough one!  Probably that I’ve made an impact in the overall employment rate of people with disabilities… whether it’s by creating policies, starting programs, or just spreading the word person by person about what’s possible.

5. Who or what inspires you?

Lots of people inspire me… whether it’s other leaders who have come before me, people I work with now, or the youth I work with through California’s Youth Leadership Forum.

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?

It gets better once the brooding teenage years pass!!  You’re always going to struggle with how society sees you, but you will be a successful, productive individual.  You will have great friendships and romantic relationships, and you will learn how to truly be happy and independent.

2. What do you like about your particular disability?

Probably the network of wacky SMAers I’ve met over the years!  It’s amazing how many funny and amazing people with SMA I’ve met – I think it must be a side effect of having weak muscles.

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

That we’re not waiting for a cure or only capable of sitting on our asses and collecting a disability check.

That the true disability is a result of societal viewpoints projected onto us (and internalized by us).  That quality of life could be improved not by cure, but by redirecting funding to be used for assistive technology (if only I afford to buy a $150,000+ van I could drive myself!), personal care attendants, and services and supports to increase access to community life.

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

My wheelchair is the most obvious one, but for the less obvious: my remote controlled door unlocker (because using keys is really a pain in the ass!)

and…

  • Where else can we find you online?  linkedin
  • Website (if you have one) + URL: (not sure if projects that I’m working on apply): www.dor.ca.gov/ylf and www.dor.ca.gov/ccepd

rachel stewart

 

I loved Simi Linton’s book, My Body Politic. I love her voice, energy, commitment. 

She is loud, proud and powerful. She is a champion of the arts and of disability. 

She is a woman that I am proud and honoured to introduce to you.

Simi Linton.

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

Getting to Know You

1. Your name:    Simi Linton

 

2. What’s your connection with disability?   I identify as a disabled woman

 

3. Star Trek or Star Wars?    None of the above

 

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

Australia, but I would send my mouth to France, my eyes to Japan, and my funny bone to UK

 

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

An apple and chestnut salad [been thinking about this combo for a while, but haven’t actually tried it]

 

Now That We’ve Been Introduced…

1. What do you do:

I am currently, along with Christian von Tippelskirch, completing a documentary film entitled Invitation to Dance.  The film is based on a memoir I published a few years ago, My Body Politic.  The focus of both the film and the book is on my life as a disabled woman over the past 40 years, and the growth of the disability rights, and disability arts and culture movement in those decades.

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

I taught at Hunter College for many years, and left in 1998 to continue writing and develop my consulting practice to arts organizations on the integration of disability and disabled people into the arts.

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

I would like to know that in 5 years, Invitation to Dance will have received recognition and a broad audience.   Christian and I hope that we will tour to many places, to present the film and talk about the implications of the film for the evolution of disability rights and arts.

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

The title of which I am most proud and wish to be remembered for:

At the Society of Disability Studies, I am known as the “Instigator of the Dance”   I helped make the dance a prominent feature of our annual conference and I expend great effort at getting people out on the dance floor and OUT.

5. Who or what inspires you?

I am wary of the term “inspire” as it has been used in peculiar ways to talk about disabled people.  I prefer to say that certain people or issues excite or goad me on or enrage me or push me to act or …..

There are so many that I will sum it up this way:  The disability community that I am part of is the most fertile, observant, responsible, astute, creative, committed, wise, persistent, funny, outrageous, savvy, miraculous, brilliant, group of citizens the world has ever known.  They get me to my desk every day, and onto the dance floor whenever possible.

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?

Some day you will feel about the disability community the way you did when you were writing the response to the previous question.  It would have been unfathomable in the early days – but it would have been useful to know.

 2. What do you like about your particular disability?

I differentiate between disability and impairment.  I am excited by my disability status – the perspective that it provides and the platform it gives me to speak about many issues and ideas.  As for my impairment – well, it is so ordinary to me at this point I am hard pressed to say what I like about it.

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

That disability is a civil rights and social justice issue.

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

My power chair is indispensible – all the rest are of secondary importance.     But the chair is USELESS in an inaccessible environment.

and…simi_cover2

  • Where else can we find you online?

http://www.invitationtodancemovie.com/

http://www.similinton.com/

 

 

 

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

 

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

 

Introduction: I’ve known Katherine for a long time – since she was just started off at UC Berkeley. I’ve followed her career trajectory with great interest, fascination and tremendous awe. This single mother of 3 pushed herself through school (- at a non-traditional age) and went on to complete her Master’s and is now teaching in the public school system.

Her teaching job? She wandered into by attending a Teach for America career session at Cal – they were inaccessible. When she pointed that out, they became interested in her and wanted her on their team, saying they needed people who could – and would! – teach them how to do it.

The conversations with them swayed her from her original plan (- which was law school) – and she became a teacher instead.

Meet Katherine. One of my favorite people in the world.

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

Getting to Know You

Your name: Katherine Reyes
What’s your connection with disability? I lost my hearing when I was 4 years old, which merged me into the concept of disability. 
Star Trek or Star Wars? Star Wars, I guess. Though I didn’t see it captioned until I was 18. I had no idea Darth Vader was Luke’s father. That’s not something you can tell just by looking at the acting. That messed me up pretty badly. 

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

What dish would your bring to our community picnic potluck? Depends on time of the year. During the school year, I’d bring by cookies from Costco. If it were summer, I’d probably bake a coffee cake. 

Now That We’ve Been Introduced…

What do you do: I teach deaf and hard of hearing kiddos. This year, I work with high school kids. 

How did you come to doing what you do? How has your career trajectory flowed? I have always known I would work with the deaf population somehow. I felt that my own lot in life was very limited and struggled to get past this limitation. When I got accepted into UC Berkeley, I knew it was my calling to help other DHH individuals succeed in every way possible. I was planning on a career in disability law with an emphasis on the deaf population but found myself with Teach for America after graduation. That is when it hit me…it is better to teach empowerment and success while people are young so that they can grow up to be their own advocates. 

Where would you like to see yourself in 5 years? I hope to spearhead a school that serves all DHH kiddos who desperately need a good education. This is especially ideal in areas where education and deafness conflict with one another, such as Tennessee. 

Not to be morbid, but what do you want people to remember about you when you’ve gone? Yikes. I’d like them to remember that I fought hard for “my people”. Heh.  

Who or what inspires you? A lot of people inspire me. My friend, Meriah, who is always so positive and free-spirited. My children, who are so resilient, hilarious, and stubborn. My fellow co-teachers, who fight everyday to ensure that their students are getting the education they deserve. My mother, who makes people uncomfortable but has a lot of logic behind her reasons. People who relentlessly pursue a better life for themselves and others. Gandhi, who believed in peace regardless of circumstances. My students who struggle but won’t give up. I am inspired everyday. 

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? I don’t think I could’ve said anything to my former self. I needed to experience all my downfalls in order to embrace who I am, including aspects of myself that I hated. And boy did I hate my disability. It took time, education, friends, and family for me to finally come to terms with who I am—there isn’t a phrase that can be uttered to completely erase the stigma attached with something that society doesn’t generally accept. 

What do you like about your particular disability? I like that I can sleep like a bear at any time. I also feel that my deafness gives me a sense of peace that many hearing people don’t seem to have. 

Any one thing that you wish people would *get* about disability? I wish people would learn to see disability as another aspect of a person, such as their skin color, height, certain personality trait, and their character. Disability isn’t something to fear. It is something to be appreciated and valued. I often feel that fear generated towards those with disabilities is akin to the fear whites had towards blacks or Spaniards towards Aztecs. It is unfounded, ignorant, and blind.  

What single piece of technology makes your life easier? Definitely the iPhone. 

*************************************
Where else can we find you online? No where else—yet! 

I love that feeling of meeting a young person and just being blown away with the ‘WOW, you are dynamite!’ and knowing in my bones that they are going to go places. I feel that way about Sandy – I haven’t met her in real life, but I enjoy her blog and I am in awe of her project, Letters to Thrive (- letters from disabled women to their younger selves). She’s got a lot of ducks lining up on her row, a lot of exciting projects in the works.

I’m delighted to introduce her to you: Sandy Ho!

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

Getting to Know You

1.       Your name:

Sandy Ho

2.       What’s your connection with disability?

Weelllll I did just write a 15 pg paper on my connection with disability for a class but I’ll try and condense my ramblings.

I was diagnosed with Osteogenesis Imperfecta (O.I.) at birth and this means my connection with disability began with a roll of the dice in my genes. Beyond my medical condition I would say my connection with the broader concept of disability didn’t begin until fairly recently, hmmm… about 2 or 3 years ago? A good friend from high school talked me into starting a blog where I share my experiences on being a young adult with O.I. Initially I balked and told him “that’s the dumbest idea ever, no one is going to listen to me. Who cares about what I have to say? I hate talking about my disability, that’s just dumb.” It took him a few weeks of constant calling me, and persuasion but eventually he talked me into starting the blog… needless to say it was a moment I am ever so grateful to have been in the wrong. When I began the blog most of my readers were other young people with O.I. and also lots of parents of kids with O.I. The blog still continues today though lately I unfortunately have less time to get reflective. These HTML-constructed babbles have allowed me to connect with lots of others – beyond those with O.I. – in the online disability community.

In so many words that sums-up my connection with disability and how it all began. And though I could go into more details about my connection with disability I’ll leave that answer as is for now.. (I peeked at the other questions below, and we’ll get into more of my connections later on!)

 

3.       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!” Not much has changed: I still love Star Trek. And I still try to get out of trouble with ridiculous lines.

 

4.       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, how could I not?!

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

Chocolate chip pancakes, or nutella and banana stuffed french toast

Now That We’ve Been Introduced…

1.       What do you do:

Ooh boy! This really depends on who you ask! A close friend actually just described me as “a crazy girl zipping around in a wheelchair making change.” A parent in the mentoring program I coordinate has described me as “..a creative and whimsical mind..”

 

My answer above might also tell you a thing or two about me that for me “what I do” is also a lot to do with “who I am.”

 

The “crazy girl” part is maybe subjective 😛  buut the rest of it is fairly accurate. I am a law school student, Program Coordinator for a mentoring program that serves young women with disabilities, I am a blogger, I’m a youth representative on the Board of Directors for Easter Seals MA, a thinker who loves to live inside my mind too much. But whatever I’m doing I’m generally motivated by two things:

a.    Am I having a positive impact?

b.    Am I learning something new?

 

The things that currently occupy most of my time though is being a law school student, and also being a Program Coordinator for a mentoring program, called Thrive. Thrive is based out of Easter Seals MA and pairs transitional age young women with disabilities with an older woman with a disability who serves as her mentor. So these days a lot of what I do involves: making connections, building community, and asking questions.

 

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

Around the time I began my blog, through serendipity, I bumped into an incredible force of a lady in the lobby at a Boston hospital one day. She also has O.I. but we connected because of her work at Easter Seals MA where she was, at the time, the Camp and Youth Leadership Program Manager. Colleen has the kind of influence over lots of youth with disabilities where they won’t realize they’re involved until they’re engaged in something they never thought they were capable of doing. So far I’m a pretty happy and barely-sane product of that influence 😉

Through our introduction I became involved in various Easter Seals MA youth leadership programs, eventually being hired as the Program Coordinator for the Thrive Mentoring Program. Colleen continues to be an incredible mentor and influence in in our work together at Easter Seals MA!

 

But all of this took (what in my quarter-century life span) seems like years for me to get to this point.

As a young person and a young professional a lot of my career trajectory has to do with maturity, and personal development. I had to become someone who is comfortable with identifying as disabled, and now also a woman with a disability (I don’t even fully know what that means yet!). I also had to become someone who recognized where her professional and interpersonal strengths are enough to focus myself in a certain direction or, at the very least within a field. These are all things that still fuel my trajectory along, I haven’t crashed yet!

 

But before all of that happened I had graduated from college with a degree in Global Studies and as a senior had been accepted to law school, fully prepared and couldn’t wait to jump into academia! My academic advisor and lots of others close to me cautioned me to slow down and think about why I was actually going to law school… aside from the fact that as a senior in college I never wanted to enter into that terrifying and mythological “real world.” So I deferred my acceptance to law school and did a year of service through AmeriCorps! I knew I wanted to go into education and also wanted to work in the public interest sector, so I took my idealism and jumped head first into creating a mentoring program that served first-generation community college students in Boston.

 

Recently I finally was able to meld two pieces of my experiences together. I took the incredible connections I gained from my early-blogger days, and mashed it together with the Thrive mentoring program. One of the activities I had the mentees & mentors do was to write letters to their younger selves. Many enjoyed the activity and out of curiosity (and with their permission) I posted a few on a tumblr! The project has since taken off like wildfire and women with disabilities (young and old) from all over the country and world have begun submitting their letters. With stunned wide-eyed awe I am trying to create a sense of community from these shared social experiences…right after I am done getting over the tingles, and mind-blow-explosions after each letter I read.

 

Creating communities, working with youth, civic engagement, education, and empowerment… are all pillars that I hope to carry with me as I build the next phase of my career… As a young professional I know that it’s something special when I can tell people that I am proud of the work I’ve done, and the people I have been able to work alongside.

 

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

Let’s be honest: as debt free as possible. In some kind of living accommodation with furniture that doesn’t look like it was duct taped together or built out of legos?

 

But just as honestly, I’d like to see myself having the same sense of curiosity and idealism that I have today. I’d like to delve into policy, and if I could ever offer my two-cents to those on the hill in five years… I’d be living my current dream. Maybe it’s work with immigrant students trying to get a college degree? Maybe it’s first-generation college students? Maybe it’s women with disabilities? Maybe it’s transitional age youth aging out of state institutions? Who knows? I just want to be excited by people I am working to help.

 

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

That every sarcastic quip I had ever uttered was delivered with nothing less than all my idealistic wit, just like the work I committed myself to.

 

 5.       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. My colleagues at Easter Seals MA. My friends in my classes I goof off with… I meant pay attention to lectures with. 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.

2.       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…”

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

We’re humans.

4.       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)

CoolCat

 

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)

Bonnie Lewkowicz and I shared an elevator once. I knew who she was and she had no clue who I was. An over-eagerly smiling stalker? A rabid fan? I could see she was trying to be polite and not yell at me to quit my staring and smiling, and I could see it would be a really*good time to introduce myself, but I get shy in inopportune moments. Like that. So all I could get out was an awkward, “uhhh…… hi!

Bonnie was gracious and that was a relief.

I’m a huge fan of hers, because as you can see, she has done some pretty radical work. Axis is the dance company that I plan on Moxie dancing for when she grows up (I featured a video of theirs before here), and Access Northern California makes travel *that* much easier for people that are chair users – so, between the dance company and travel company, she has me, whole-hog.

I love her, and so grateful that she’s joining us today so you get to know her too.

xo

*********

Getting to Know You

 

Your name: Bonnie Lewkowicz

 

What’s your connection with disability? I always say I was thrown into the world of disability because I was thrown from an all-terrain vehicle and sustained a C5-6 spinal injury when I was 15.

 

Prior to that I volunteered in a state institution for severely disabled children because a friend had a sister living there and found it both gratifying and horrifying. Now I’m an advocate for change.

 

Star Trek or Star Wars? Definitely Star Trek. I didn’t know my generation had a choice.

 

If you could live in any other country for 2 years, where would you go? Well without having a disability I’d say Brazil or Bali but given that I don’t have that option, at this point in my life I wouldn’t want to live in another country. I value my independence too much.

 

What dish would your bring to our community picnic potluck? That’s a tough one because I’m a moody eater but right now since tomatoes are in season, either gazpacho or tomato, basil, mozzarella salad

 

Now That We’ve Been Introduced…

 

What do you do: It depends on the day of the week. I’m the founder/director of Access Northern CA (ANC), an organization committed to making tourism and outdoor recreation more accessible to people with disabilities and as the sole employee I do all aspects of running a non-profit.

 

Primarily I write access guides and conduct disability awareness trainings for hotels. My current project is finishing up a website (WheelingCalifornia’s Coast) of accessible parks, trails, and other points of interest along the CA coast. This involves a lot of travel and hiking (tough job) but then comes the challenge of writing about it.

 

I’m also one of the founders of AXIS Dance Company and while I now only perform minimally I still teach dance and teach about physically integrated dance.

 

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

I studied Recreation Therapy in college after experiencing first hand the physical, mental and social benefits of participating in sports and recreation. I wanted to help other people discover their pathway to well-being so I chose a career, Recreation Therapy, that would enable me to do that.

 

My senior year I did an internship at BORP (Bay Area Outreach & Recreation Program) and it turned into an 8-year job of organizing outdoor adventures and sports programs. I found that I would get a lot of inquiries from people wanting to know where they could go camping, hiking and traveling on their own and not with an organized group.

 

I was also becoming increasingly frustrated with the difficulties that I and my friends with disabilities experienced while traveling in a wheelchair and trying to participate in outdoor recreational activities. One of the biggest problems we encountered when trying to plan a trip or outing was a severe lack of readily available and reliable access information that would give us a successful, rewarding experience. I then decided to become a travel agent that specialized in accessible travel (I now call it inclusive tourism).

 

My mission was also to educate and inform tourism and recreation personnel about how to best serve people with disabilities. After seven years of this work, and still being anxious about my clients having access problems on their trips, I started ANC so that I could work on a local level and personally inspect hotels, attractions, parks and trails and thereby verify access. I would then share this information in guides and on a website.

 

Simultaneously with my work at ANC, I performed, toured and taught with AXIS Dance Company. While ANC has given me great satisfaction professionally, AXIS has given me great joy personally––I feel blessed to have had both.

 

Where would you like to see yourself in 5 years? I don’t really plan much for the future, much to my husbands dismay, but I’d say at peace with the life I’ve lived and still healthy and physically active.

 

Not to be morbid, but what do you want people to remember about you when you’ve gone? That I was a good friend and that I had a generous heart

 

Who or what inspires you? Seeing other people doing good in the world inspires me to do the same

 

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? 

Independence doesn’t mean you can do everything by yourself, it’s more about taking control over getting what you want.

 

What do you like about your particular disability? That it’s pretty stable and not progressive.

 

Any one thing that you wish people would *get* about disability? Hard to narrow it down to just one thing but I’d say it’s that we’re neither a tragedy or brave––we’re just people doing what we’ve got to do to make a life.

 

What single piece of technology makes your life easier? Hands down my wheelchair

bonnie l

Where else can we find you online?

Access Northern California

Axis Dance

A Wheelchair Rider’s Guide to the California Coast

Jewish Sports Hall of Fame  

and!

Watch Bonnie being interviewed on Wheelchair Access to California Trails:

 

…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!

…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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