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Marcus Sikora

Marcus Sikora is the first Voice interview via video!

Like a lot of other things he does, he’s breaking ground here.

Please welcome him, and then stay tuned for more from him.

Music Video from Marcus

and Marcus' Book: "Black Day: The Monster Rock Band"

Check It Out!
Black Day: The Monster Rock Band
by Marcus Sikora with Mardra Sikora

Find Marcus on social media:

Facebook https://www.facebook.com/GrownUpsAndDowns/

Twitter @MarcusMusical

 

Getting to Know You

  1. Your name: Alice Wong
  1. What’s your connection with disability?

I was born with spinal muscular atrophy, a neuromuscular disease that results in muscles weakening over time—each person’s progression is different.

  1. Star Trek or Star Wars? 

While I have a strong affinity for Yoda and Boba Fett, I will say Star Trek.

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

I’ve been fascinated by Scandinavian countries ever since watching tv dramas such as ‘Forbrydelsen’ (The Killing), Borgen (The Castle) or Wallander so I would have to say Denmark or Sweden.  Not only are these countries socially progressive, I love the design aesthetic.

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

I make a decent sour cream coffee cake and frittata. I’ll bring both!

Now That We’ve Been Introduced…

  1. What do you do:

I have two part-time jobs: Staff Research Associate at the UCSF Center for Personal Assistance Services and I serve as a Council member of the National Council on Disability. The Center for PAS is focuses on research in personal assistance programs such as Medicaid HCBS waivers and other personal care programs.  NCD is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities.

*2016 update: Alice works on various research projects for the Community Living Policy Center, a Rehabilitation Research and Training Center funded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) and the Administration for Community Living. She is an author of online curricula for home care providers and caregivers for Elsevier’s College of Personal Assistance and Caregiving. Currently, she is the Founder and Project Coordinator for the Disability Visibility Project (DVP), a community partnership with StoryCorps and an online community dedicated to recording, amplifying, and sharing disability stories and culture.

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

As a kid, I loved writing and reading. I attended a small liberal arts college (EarlhamCollege) for as a first-year student and loved it. Unfortunately, I became ill and had to take a leave of absence. By the time I was ready to return next year, Medicaid cut my hours of home health care (in Indiana) that didn’t make it feasible for me to go to a private school (parents paying for tuition) and pay for my own personal care.

I decided to be pragmatic and went to a commuter school and lived at home while plotting my next big move.  I double majored in English and sociology and really learned a lot.  English was a means to improve my writing skills and a wonderful excuse to buy lots of novels.  Sociology appealed to me because as a young disabled person I had a lot of rage and frustration at the discrimination I experienced.

I learned about the sociology of disability and the social model of disability—sociology really opened my understanding of my everyday experiences by placing it within a larger social context.  Long story short, I went to UCSF for grad school because of their program in medical sociology and fell into research which I love. I’ve been really lucky to work at UCSF as a grad student and continue as a staff member after school.

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

I want to see myself still relatively healthy with enough energy to do all the things I want to do!  I felt a real shift in my energy five years ago that caused me to slow down and make some tough choices.  I say no to a lot of things and that’s cool with me now. I’m also more cautious but I think that’s just me being smart with what I’ve got.

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

Hmmm, I guess to remember that it’s cool to be picky and geeky about stuff.  My parents and sisters like to call me a picky cat which wear like a badge of honor.  To remember I was a good friend and enjoyed every moment of life.

  1. Who or what inspires you?

In addition to family and friends, I’d say nature inspires me.

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?

This is an excerpt from an essay I wrote in a special issue on disability in Amerasia Journal titled, “First-Person Political:  Musings from an Angry Asian American Disabled Girl”:

I know you’re tired and there are times when life sucks a lot.  You may not believe it, but when you grow up you’re going to have so much fun and do many exciting things.  The world is going to open up for you.

Laws like the Americans with Disabilities Act and programs such as Medicaid personal care services are going to help you live your life the way you want.  Most importantly, you will be in control and will have numerous choices.

You are going to live the greatest city in the world, San Francisco, and become a coffee fiend.  You are going to become a notorious night owl.  Just hang in there, keep reading and stay angry.

  1. What do you like about your particular disability?

It sounds cheesy, but my disability gives me a great perspective on social behavior from a ‘outsider’ or marginalized position.  For example, being left out of activities at school, hearing stupid comments from adults, interacting with doctors at an early age, all of these experiences taught me a lot about how social meanings change from group to group and over time—that good and bad things can happen to anyone.

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

Disability is just a natural part of human variation—people shouldn’t be afraid of it even though it might represent frailty or death to some.  Disability should be embraced as something that makes our society more diverse and rich.

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

I live because of a Bi-Pap machine that helps me breathe. I live because of an electric wheelchair that gives me independence.  Other than those 2 devices, without a doubt my MacBook Pro and high-speed Internet make my life infinitely easier and better.

Alice Wong with Representative Tammy Duckworth, 2012.
Alice Wong with Representative Tammy Duckworth, 2012.

You can follow Alice on twitter: @SFdirewolf

and: The Disability Visibility Project

___________________________________________

Originally published in 2013

Getting to Know You

  1. Your name: Alana Theriault, some friends call me Al.
  1. What’s your connection with disability?

Disability has always been there presenting puzzles for me to solve, connecting me with people who solve their own puzzles in their own ways, and me helping others solve their own puzzles involving disability.

  1. Star Trek or Star Wars?

Star Trek – Always sci-fi above fantasy, but fantasy’s good, too.

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

China…I would pick up where I left off with my study of Mandarin 25 years ago, and enjoy watching people (and watch people watching me) while eating different regional foods and seeking out other artists and people with disabilities. I’d have to apologize a lot for my poor grammar and American crassness.

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

I’d probably bring two: Baked Macaroni & Cheese with Fresh Crab and a Spicy Tomato Chutney on the side, and a Vegetable Curry Pie with Homemade Crust.

Now That We’ve Been Introduced…

  1. What do you do:

I cook really good, healthy food. I go to work. I manage a fabulous team of people who help me care for my body and home. I comply with the government-imposed rules that make me eligible for the services I need to stay alive. This takes a lot of time.

At work, I teach other people with disabilities how to comply with the government-imposed rules that make them eligible for the services that they need to stay alive. Yes, I’m cynical and resentful about this ironically inhumane cat-and-mouse game; I also do the work with defiant enthusiasm and great passion for serving people with disabilities well.

"Girls", by Alana Theriault - image is of a pencil drawing made of small dots. It is a circle of feet, as if the feet were of a circle of wheelchair users
“Girls”, by Alana Theriault – image is of a pencil drawing made of small dots. It is a circle of feet, both standing and sitting

I keep house and spend too much time on Facebook. I draw medium-sized pictures with tiny little dots, often while listening to an audiobook or watching reruns of Law & Order. I drink tea with friends, and try to be there for the people I love. Sometimes I write. More often I help friends with their disability benefits questions, and I sometimes volunteer these services in on-line communities. I watch science fiction and eat at good restaurants with the love of my life, Chuck, and together we are amused by the antics of our cats. I garden and then cook some more.

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

I cut my teeth volunteering at the Center for Independent Living in the early 80s with Pamela Walker in Personal Assistance Services and Sandy Stone in Blind Services. Simultaneously, I dove into the Cooperative Movement by starting at a little co-op food store on the UC Berkeley campus. There I learned how to cook burdock root and do double-entry bookkeeping with a pencil.

Since then, co-ops and disability advocacy have been woven into my life. I’m passionate about small urban homestead food networking among friends as much as I am about tweaking or crafting state and federal policy, though, now that I’m semi-retired I take much smaller bites of any given project.

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

Pretty much here, doing what I’m doing. I’d like to be less distracted and more able to follow through on creative projects.

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

I want people to remember how I problem-solve and dive into the things I’m curious about. I want them to know that when I was writing the previous sentence I debated about whether or not to end it with a preposition, and that at age 49 I’m learning to let go of the little stuff, but it’s hard. In remembering me, I hope they follow their own curiosity and use Google and libraries and try to do new things.

  1. Who or what inspires you?

I am inspired by people’s passions and creativity, and admire when folk work hard to reach their goal. I am especially impressed by people who pause before taking action, and then act deliberately and with kindness. I’m always learning from them.

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?

Be kind to yourself. You will eventually like yourself. Don’t try to be and do everything, and remember that getting angry isn’t a bad thing.

  1. What do you like about your particular disability?

I like that it’s been gradual, giving me time to solve the new puzzles it presents, and time to mourn the things I can no longer do.

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

I wish people would stop thinking of disability as something special, but instead as simply being a place on the continuum of being human. It’s an inevitability for most. We are not heroic or courageous because we simply go about our lives, and when people put us on such a pedestal it makes us “other” when we are truly just part of the bigger “us”.

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

My computer.

and…

  • Where else can we find you online?

Alana TheriaultFor prints or cards of my drawings, people can got to: www.alanadesigns.com or e-mail me at: info@alanadesigns.

To chat, introduce yourself via e-mail or Facebook (don’t just send me a “friend request”…Message me, say Hi!).

 

Your name: Neil Jacobson

What’s your connection with disability?

I have always had Cerebral Palsy. I also consider myself part of the disability community as well as an advocate for people with
disabilities

Star Trek or Star Wars? Star Trek

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

I’ve been to many countries including England, Germany, Denmark, Switzerland, Norway, Japan, Israel, Canada and Mexico. In my golden years I wouldn’t want to live anywhere but the USA!

What dish would your bring to our community picnic potluck?

Cookies and fruit pies

Now That We’ve Been Introduced…

What do you do:

As you know, after 29 years of working at Wells Fargo, I retired to start a disability-focused employment company that specializes in consulting on staffing and placement issues. I quickly realized that there are systemic problems that intrinsically inhibit people with disabilities from working and being productive. Our society holds very low expectations for individuals with disabilities.

Defining disability as the “inability to work” in order to receive disability benefits is an inherent disincentive. I am dedicating the rest of my retirement to see that these antiquated policies are changed. I am doing so by working with The World Institute on Disability where I am leading an initiative called CareerACCESS. I am attaching a brief description of CareerACCESS. To learn more about it, please see http://www.careeraccess.org.

So now I am trying

a) run Abilicorp

b) lead the CareerACCESS initiative

c) be a good board member on 3 non-profit agencies,

d) be a good husband and father and friend and

e) deal with a progressing disability – not necessarily in that order!

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

You can find my oral history at
berkeley.edu/collections/drilm/collection/items/jacobson.html.
I also suggest reading The Question of David, by Denise Sherer Jacobson.

Basically, I owe a lot to my Mom who, being a holocaust survivor, believed I HAD to succeed, to my special education teachers and classmates who believed I COULD succeed, to my high school and college environments that showed me how to succeed, to the disability community that encouraged me to succeed, to jobs including CTP and Wells Fargo that ENABLED me to succeed and of course Denise and David who made me feel loved.

Where would you like to see yourself in 5 years?

5 years from now I hope to be completing my PhD, advising the implementation of Social Security reform that enables people with disabilities to work via CareerACCESS, writing a book on disability and money, spoiling a grandchild, and enjoying mocha with friends

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

‘He was a good guy. He did a good job, Go! Go! Go!’

Who or what inspires you?

Judy Heumann, who I have been close with since I was 4 years old and
who has tirelessly worked for the Disability Movement. My father who
was a simple down-to-earth guy who knew what he wanted (which was to
see his 3 kids grow up and be OK)

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?

Use Personal Assistant Services! Use time and energy for important
things. There are wonderful people available, ready and able to
assist. To be independent, you need to know how to be dependent

What do you like about your particular disability?

Because my disability is so obvious, I’ve had the great opportunity of
observing the world from a ‘different’ view point. Because I couldn’t
do things the ‘normal way’ I had to create ‘my way’ of doing things.
It was (is) great to know there’s always a way to do what you really
want to do.

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

We are indeed people first. Some of us are nice, some not-so-nice,
some funny, some warm, some cold, some bright, some boring etc. We all
have good days and bad days. Enjoy what you like and forgive the rest.

What single piece of technology makes your life easier?

My powered wheelchair! Before high school, I never used a wheelchair.
In high school and undergrad college, I only had a manual wheelchair.
The day I arrived in Berkeley (8-23-1974), Ed Roberts convinced me to
use a powered wheelchair. Since then, you could take away my car and

my home and my belongings but don’t take away my powered wheelchair!

neil jacobson

Connect with Neil through:

Abilicorp

AssistMeLive

LinkedIn

Read his story: Bancroft Library Oral History Project

 

 

Getting to Know You

  1. Your name: Alice Wong
  1. What’s your connection with disability?

I was born with spinal muscular atrophy, a neuromuscular disease that results in muscles weakening over time—each person’s progression is different.

  1. Star Trek or Star Wars? 

While I have a strong affinity for Yoda and Boba Fett, I will say Star Trek.

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

I’ve been fascinated by Scandinavian countries ever since watching tv dramas such as ‘Forbrydelsen’ (The Killing), Borgen (The Castle) or Wallander so I would have to say Denmark or Sweden.  Not only are these countries socially progressive, I love the design aesthetic.

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

I make a decent sour cream coffee cake and frittata. I’ll bring both!

Now That We’ve Been Introduced…

  1. What do you do:

I have two part-time jobs: Staff Research Associate at the UCSF Center for Personal Assistance Services and I serve as a Council member of the National Council on Disability. The Center for PAS is focuses on research in personal assistance programs such as Medicaid HCBS waivers and other personal care programs.  NCD is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities.

*2016 update: Alice works on various research projects for the Community Living Policy Center, a Rehabilitation Research and Training Center funded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) and the Administration for Community Living. She is an author of online curricula for home care providers and caregivers for Elsevier’s College of Personal Assistance and Caregiving. Currently, she is the Founder and Project Coordinator for the Disability Visibility Project (DVP), a community partnership with StoryCorps and an online community dedicated to recording, amplifying, and sharing disability stories and culture.

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

As a kid, I loved writing and reading. I attended a small liberal arts college (EarlhamCollege) for as a first-year student and loved it. Unfortunately, I became ill and had to take a leave of absence. By the time I was ready to return next year, Medicaid cut my hours of home health care (in Indiana) that didn’t make it feasible for me to go to a private school (parents paying for tuition) and pay for my own personal care.

I decided to be pragmatic and went to a commuter school and lived at home while plotting my next big move.  I double majored in English and sociology and really learned a lot.  English was a means to improve my writing skills and a wonderful excuse to buy lots of novels.  Sociology appealed to me because as a young disabled person I had a lot of rage and frustration at the discrimination I experienced.

I learned about the sociology of disability and the social model of disability—sociology really opened my understanding of my everyday experiences by placing it within a larger social context.  Long story short, I went to UCSF for grad school because of their program in medical sociology and fell into research which I love. I’ve been really lucky to work at UCSF as a grad student and continue as a staff member after school.

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

I want to see myself still relatively healthy with enough energy to do all the things I want to do!  I felt a real shift in my energy five years ago that caused me to slow down and make some tough choices.  I say no to a lot of things and that’s cool with me now. I’m also more cautious but I think that’s just me being smart with what I’ve got.

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

Hmmm, I guess to remember that it’s cool to be picky and geeky about stuff.  My parents and sisters like to call me a picky cat which wear like a badge of honor.  To remember I was a good friend and enjoyed every moment of life.

  1. Who or what inspires you?

In addition to family and friends, I’d say nature inspires me.

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?

This is an excerpt from an essay I wrote in a special issue on disability in Amerasia Journal titled, “First-Person Political:  Musings from an Angry Asian American Disabled Girl”:

I know you’re tired and there are times when life sucks a lot.  You may not believe it, but when you grow up you’re going to have so much fun and do many exciting things.  The world is going to open up for you.

Laws like the Americans with Disabilities Act and programs such as Medicaid personal care services are going to help you live your life the way you want.  Most importantly, you will be in control and will have numerous choices.

You are going to live the greatest city in the world, San Francisco, and become a coffee fiend.  You are going to become a notorious night owl.  Just hang in there, keep reading and stay angry.

  1. What do you like about your particular disability?

It sounds cheesy, but my disability gives me a great perspective on social behavior from a ‘outsider’ or marginalized position.  For example, being left out of activities at school, hearing stupid comments from adults, interacting with doctors at an early age, all of these experiences taught me a lot about how social meanings change from group to group and over time—that good and bad things can happen to anyone.

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

Disability is just a natural part of human variation—people shouldn’t be afraid of it even though it might represent frailty or death to some.  Disability should be embraced as something that makes our society more diverse and rich.

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

I live because of a Bi-Pap machine that helps me breathe. I live because of an electric wheelchair that gives me independence.  Other than those 2 devices, without a doubt my MacBook Pro and high-speed Internet make my life infinitely easier and better.

Alice Wong with Representative Tammy Duckworth, 2012.
Alice Wong with Representative Tammy Duckworth, 2012.

You can follow Alice on twitter: @SFdirewolf

and: The Disability Visibility Project

 

 

Your name: Pauline Victoria

What’s your connection with disability?

I’m a person born with a disability, no arms and one short leg

Star Trek or Star Wars?

Star Trek. I grew up watching it with my parents and I love the idea of a variety of species coming together for a common good.

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

Uruguay.  It seems to be a melting pot of different cultures with a growing economy and a peaceful approach to worldwide issues.

What dish would your bring to our community picnic potluck?

Strawberry shortcake with whipped cream.

Now That We’ve Been Introduced…

What do you do?

As a professional, I’m an entrepreneur who does Inspirational Speaking and other online outreach.  I use video as my primary platform to reach out to people.  Although speaking has its place and own unique power, it is more challenging for me to travel. Also, video for me is in my sweet spot, it’s evergreen and has a broader reach beyond space and time.  You can find my videos on my YouTube Channel, http://www.youtube.com/user/PaulineVictoriaAughe.

Although I do general inspiration, I have been called to focus my efforts on the disability population. Because of this, I created and produce Chair Chats, a lifestyle web TV talk show with a disability twist.  On this show I interview people on various life topics and experiences from a disability perspective. My motivation behind the show is to help connect, inform and inspire people with disabilities.  There is nothing like this in the US. I’m hoping it can grow over the next 5 years to reach millions.

Personally, I’m a proud wife and mom to a 7-year old who I homeschool.

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

When I lived in California, I worked for a variety of tech companies and then for the City government.  In 2006, we (my husband and three kids: 16, 13 and 4 months old) moved to the Big Island where most of my time was spent as a mom.  In 2009, after a series of events (this is the Reader’s Digest version), I met Les Brown who was interested in helping me pursue a speaking career.  Doing a lot of introspection, I chose to take ownership of my gifts as a person with unique perspective and experiences with a decent ability to communicate and use it in a bigger way to inspire more people to live fully.  Since then, I ask for guidance from a higher power, and I bring to fruition the ideas presented to me.

Where would you like to see yourself in 5 years?

In 5 years, I hope to still be a proud wife and mother.  I’d like to be financially independent with the ability to reach millions of people through the media (mainstream or otherwise).

My bigger hope is that people with disabilities are more represented in mainstream media as characters, news casters, talk show hosts, etc.  I believe the media is very influential on society and can be used to create equality among all people.  I have great hopes that as people with disabilities are more represented in the media, society will also be more accepting.

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

She lived with purpose and spirit.

Who or what inspires you?

My parents who taught me to believe in order to see.

 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? 

You are not alone.  This too shall pass.  Hold on to your faith.

What do you like about your particular disability?

I love that I get to exceed people’s expectations of what’s possible.

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

Nothing is guaranteed. Disability can happen to anyone, so be grateful for what you have and use your gifts to the best of your ability.

What single piece of technology makes your life easier?

I’m so very grateful to live in this day and age of technology and appreciate many things.  I have a hard time choosing one, so I’ll choose three:

1. My wheelchair which not only provides me with mobility and freedom, it also gives me dignity.

2. My van that I can drive.  This is another level of independence and freedom that allows me to be more impactful and social.

3. The internet allows me to be connected globally beyond my local area.

***

Website: www.PaulineVictoria.com

YouTube Channel: http://www.youtube.com/user/PaulineVictoriaAughe

paulinevictoriaaughe

 

The “Voices from the Disability Community” series, in which people with disabilities share different slices of their lives. A space for people to hopefully connect over shared voices, experiences or disabilities.

Please welcome Kari Lynn Pope

____________________________

Getting to Know You

  1. Your name:  Kari Lynn Pope, but that’s about to change because I’m getting married on November 21 this year!
  1. What’s your connection with disability?  I am a disabled person. I have cerebral palsy. As such, before I started my current job, I was an advocate for several years for the Arts and Disability Network through the National Arts and Disability Center at UCLA. I do my best to continue disability advocacy through my freelance writing, most specifically and most recently in the community blogging project Disability Right Now: https://disabilityrightnow.wordpress.com
  1. Star Trek or Star Wars?  Both. I’m not much for fandom in general, and not a sci-fi geek like lots of my friends are, but I’ve always liked the original Star Wars trilogy, and I was a huge Star Trek: TNG fan while I was growing up.
  1. If you could live in any other country for 2 years, where would you go? Well, I did live in Germany from 2008-2010, in my current life as an ESL teacher. I’ve also lived in Ireland and Turkey, and had a chance to visit several other countries. In the U.S., though, I’ve always called California home, so I think if I had to choose two years in a new place, I’d pick a different state here. Maybe Mississippi, where my fiancé is from, or New York, where my sister lives.
  1. What dish would your bring to our community picnic potluck? Anything you asked for (within reason.)

Now That We’ve Been Introduced…

  1. What do you do: I teach English as a Second Language now.
  2.  How did you come to doing what you do? How has your career trajectory flowed? It was a tough decision for me to leave full-time disability community work. I think the fact that I’d started when I was really young (22) had something to do with it; I felt (and still sometimes feel) that I owe something to the community, to the movement. I was also always very conscious of my position on the “disability food chain” as a person with mild CP.

Having come to advocacy work through disability studies and through theater and integrated dance, I didn’t meet many other folks who were like me, at least not in obvious ways. After I’d started working in the community, I got to feeling like some people thought my disability was a joke I was playing on them, like, “Yes, I have CP. But no, I don’t use a wheelchair, or any mobility aids, in fact. I walk. I talk. I don’t even drool (much.) Really.”

Some people’s idea of encouragement was that I “keep passing,” which I can do when I’m sitting down. But I thought, “I don’t want to play ‘Now you see it, now you don’t’ for the rest of my life.” It’s kind of scary when you have to try to get people to trust you even when they know you don’t have the same kind of access needs that they have, or need the same kind of services and supports that they do, for all that you carry the same basic identity label in the world at large.

It got to be very confusing and overwhelming for me, so I decided to pursue other things I’d dreamed about, like traveling and learning other languages. As I’ve done that, my writing, especially through the Disability Right Now blog, has helped me stay connected, as well as explore in an inclusive way some disability issues that are (emotionally) close to home for me.

  1. Where would you like to see yourself in 5 years? As I said, I’m getting married soon, and my fiancé and I are
    very excited about starting our family! So, best case scenario, I’ll be mama to a kid or two (or even three, if I still have time enough!)
  2. Not to be morbid, but what do you want people to remember about you when you’ve gone? Having lost a lot of people close to me throughout my own life, I’ve given this a lot of thought–not that I want to be morbid, either. But a few years ago, I decided I will be content if in my eulogy someone remembers that, “Kari found the ordinary extraordinary, and by her presence, made it so.”
  1. Who or what inspires you? Inspiration: I take a lot of inspiration from many colleagues, students, family and friends–but especially from my fiancé, who has transformed his whole life through his recovery from alcoholism. My faith also inspires me a lot. It’s most of what I blog about these days, here: http://writingthetao.blogspot.com and here: http://thepopeofpop.blogspot.com

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? This is a tough one. I’m not sure I have anything original to say! After thinking about it, I’ve realized that the #ItGetsBetter campaign in the gay community a few years ago made a big impact on me.
You Get Proud by Practicing
You Get Proud by Practicing

I was bullied really badly in school and the social stigma of having a disability hit me hard, because I have a non-disabled identical twin who is a dancer! So people were always comparing us, most insidiously within our own family. I can’t say I grew up with any sense of self-worth at all.

On a writing assignment one time I interviewed my friend and elder advocate Anthony Tusler, who said that he thinks people in the gay community have done a much better job than we have in the disability community of addressing issues of self-loathing. From what little I know, I would tend to agree based on how difficult it can be to create a safe and inclusive cross-disability forum. There’s a lot of in-fighting that goes on, even among people who start with the best of intentions.

And my experience as a disabled adult in more integrated settings is that bullying isn’t always something that people outgrow; it can become a kind of subtle, passive-aggressive ostracism. I experienced that time and again in my twenties, especially while I was traveling.

So if anybody had told me ten, or even five, years ago that today I would be in a “day job” I enjoy with meaningful artistic and activist opportunities still open to me, all while I’m about to marry a man I’m head over heels in love with, I wouldn’t have believed it. It all just makes me want to grab my teenage self in a bear hug and say, “See? It does get better. It really does!”

  1. What do you like about your particular disability? My physique! Seriously. High muscle tone is the best thing that could have happened to this palsy lady!
  2. Any one thing that you wish people would *get* about disability? That it’s not always about how disability looks. This is not just with respect to visible vs. invisible disabilities. I can’t tell you the number of times my startle reflex has been activated needlessly by non-disabled folks who want to “help” me. My PSA to all of them is, “Just because something
    I’m doing looks difficult to you, doesn’t mean it’s difficult for me to do. I’ll do what I need to do the way I know how, and if I need input along the way, I’ll ask for it.” Nobody knows my body, or my disability, better than I do.
  3. What single piece of technology makes your life easier? This is going to sound corny as Hell, but–Facebook! I use it to keep in touch with people from all aspects and times of my life. It’s the most meaningful platform I have right now for my intermittent blogging as well as for speaking up about issues that are important to me. I’ve even used it to facilitate my wedding planning! Lately I’ve been trying to focus on using it in a more accessible, more inclusive way. My latest project as far as that goes is captioning/describing the photos, links, and other visual content I post. Thereby I hope I can better assist others in using the same technology I enjoy so much and find so useful myself!

and…

  • Where else can we find you online?

http://writingthetao.blogspot.com and here: http://thepopeofpop.blogspot.com

Kari Lynn Pope
Kari Lynn Pope

 

 

Getting to Know You

  1. Your name:

Andrew Pulrang

  1. What’s your connection with disability?  

I have had physical disabilities all of my life, since birth. I have Arthrogryposis.

  1. Star Trek or Star Wars?  

Star Trek. I like all of the series, but the Original Series is my current favorite. Star Wars is fine, and of course I loved it when the original trilogy first came out, but the whole idea of the Jedi bothers me … a small number of people born with inherited elite abilities who therefore have the moral authority to rule and dispense justice. Kind of like aristocracy, but with some weird Sci-Fi / biological justification. Yes, I’m a nerd and yes, I overthink things.

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

England

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

Deviled Eggs

Now That We’ve Been Introduced…

  1. What do you do:

I am a disability blogger and podcaster. I also tutor community college students in writing.

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

Right through high school and college, I told everyone that I didn’t want to work in the disability field or join any sort of disability group. I felt that way partly because I didn’t know that anything like Disability Culture or a Disability Rights Movement even existed. It would probably be more accurate to say that I had been told about these things from time to time, but it went in one of my adolescent ears and out the other.

Then, during my senior year in college, I heard about the Deaf President Now movement at Gallaudet University, and soon after learned about consumer-directed, activist oriented Centers for Independent Living. It revolutionized how I viewed disability. After graduate school, I started working at my local CIL. I worked there for 23 years. For the last 13 I was the Executive Director. I left that position because I was exhausted, both physically and mentally, and because I wanted to explore other aspects of disability culture, mainly through blogging and social media.

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

Teaching English 101 part time at my local community college, plus blogging, and podcasting. Another possibility is overseeing some kind of network of disability blogs and / or podcasts.

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

I want people to know that I enjoyed my life.

  1. Who or what inspires you?

The online disability community inspires me, particularly its advocacy, diversity, and confidence.

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?

You don’t have to look away from your disability and shun other disabled people in order to be a happy and interesting person. There are ways of consciously being a disabled person that are exciting and fun.

  1. What do you like about your particular disability?

This is a difficult question to answer, but to be completely honest, I like that my disability doesn’t affect my intellect. I like that it hasn’t prevented me from being able to explore and understand life deeply and intellectually. I am grateful that for the most part, I have always understood what is happening to me at any given moment, and I have rarely felt profoundly disoriented.

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

I wish more people would *get* that there are many valid ways to view disability. I’m not just talking about the obvious fact that everyone’s experiences and thoughts are unique. I’m saying that you don’t have to choose between a strictly-defined Medical Model or a strictly defined Social Model. Being strong and clear about these things is important because it helps people make sense of disability, but as descriptions of actual experience, all models are at best only partially effective. Having a positive view of one’s disability doesn’t mean you never wish you weren’t disabled, and working hard fix some aspect of your disability and fit in doesn’t mean you hate your disability or yourself. We can vary our thinking. We can blend ideas. This is as important for disabled people to *get* as it is for non-disabled people.

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

My ventilator, which helps me breathe at night, and has done for the last 30 years, keeps me alive. Convenience-wise, I would have to say my computer, which is vital to my blogging, tutoring, entertainment, and organizing my life so I can use my limited physical stamina as efficiently as possible.

5. Where else can we find you online?

Andrew PulrangDisability Thinking Blog

Disability.TV Podcast

Facebook

Twitter: @AndrewPulrang

Google+

Patreon

 

 

 

Cheryl-11Getting to Know You

  1. Your name:  Cheryl Green
  2. What’s your connection with disability?  I have mild disabilities from traumatic brain injury, a voice disorder, and something brewing in my knees that will catch up to me sooner or later. I’m also connected to disability through work in disability arts and justice activism that I started in way back in 1996 when I was non-disabled.
  3. Star Trek or Star Wars?  Um. Milo and Otis?
  4. If you could live in any other country for 2 years, where would you go? Brazil.
  5. What dish would your bring to our community picnic potluck? Lentils and rice if I feel confident or probably just chips and hummus because my cooking can be so, shall we say, less than delectable.

Now That We’ve Been Introduced…

  1. What do you do: I’m a media artist working in film, blogging, and podcasting. My focus is on disability identity and culture in my content and also on access. I incorporate access features to my media like transcribing my podcasts in screen reader-accessible formats, audio recording my blog, and Closed Captioning my films. I also make Closed Captions for lots of other presenters and performers, and I bug big-name stars and online news sites to caption their content in my spare time. I hire out for Audio Description for my film screenings and recorded media and always have ASL interpreting at screenings as well. (I’m going to start including CART to go along with ASL interpreting.) To me, the content is not more important than the access features that create the space for people to enjoy the content.
  2.  How did you come to doing what you do? How has your career trajectory flowed?

Big props to VSA Texas and Terry Galloway who got me started in disability arts in 2002 with VSA work and “Actual Lives: Austin”. There, I first learned about disability culture and identity and the horribleness of inspiration porn.

It’s where I came to recognize that I had lived my entire life without examining why the disability community is so marginalized. Also, it was good old-fashioned fun, and as a non-disabled summer intern, I was at the bottom of the heap. That’s not what a lot of non-disabled people expect to hear when I tell them about the project. After that, I did a lot of mixed ability dance with groups in Austin, TX and Portland, OR for several years.

After acquiring TBI disabilities in 2010, I lost my job and turned back to the disability arts scene. This time, I was inside the community and had a ton to protest about the way that being a patient in TBI rehab felt very dehumanizing, demoralizing, and pretty much the opposite of what I’d learned disability culture can be from the Austin and Portland folks. I wrote a short comedy film about life with TBI (“Cooking with Brain Injury”) for Curtis Walker’s “No One Wants to See the Wires” performance project. I thought the film was a joke, but it ended up launching me into writing more short films, starting a web series, directing and producing a feature-length documentary, state and national presenting, and all the other media work I do now. Kind of amazing.

  1. Where would you like to see yourself in 5 years? Oh, getting paid for all this stuff I do. I love making Closed Captions and plan to grow that business as well as do a lot of community building, presenting, and direct action around my documentary, “Who Am I To Stop It.” I’ll still have my same Office Manager, Prince Hal, the black and brunette cat who rules my life. I hugely enjoy working one on one with people to create content, improve access, and become media-savvy activists.
  2. Not to be morbid, but what do you want people to remember about you when you’ve gone? How much my love of cats powered my entire existence.
  3. Who or what inspires you?

I’m inspired by a lot of social justice and disability justice activists, especially ones working in the arts. I see their work and think yes, yes, yes, I need to add that to what I’m doing. I missed something else. Thank you!

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?

Go talk to someone else going through a similar situation to get some perspective. You don’t have to spend all your time being pissed off about acquiring a disability and self-righteous about how poorly people respond to you now that you’re disabled. This was when my vocal cords got destroyed, and I lost my voice physically and metaphorically. (It never occurred to me to find someone else who struggled to speak, and my speech therapists never suggested it either.) Go get some peer support right now, you! And yes, your rights were just violated under the ADA even though you don’t think you’re “disabled enough” to earn the right to do something about it.

  1. What do you like about your particular disability? I had any sense of introversion and shyness literally knocked out of me with a brain injury. I’m impulsive, excited, and am no longer scared of meeting new people. For many years, I’ve loved touching and smelling wonderful things, but now I get even more, deeper fantasticness by immersing myself in looking, touching, smelling, or being near great stuff.
  2. Any one thing that you wish people would *get* about disability?

Hey! It’s not about you! If you’re non-disabled or interacting with someone with a different disability (and racial, ethnic, cultural, financial, gendered) experiences than your own, then your discomfort, wishes about how they’d identify, suggestions for fixes, and desire to show off what you think you know about impairments are not needed. Step back. There is no need for you to assume that a disabled person needs your suggestions, rules for living, or corrections to our views about our own lives.

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

My precious computer. Its name is Monster. It is great beyond description. I miss it when I’m out of town. In fact, I lose a good percentage of my creativity when we’re apart and no other type of computer monitor or keyboard wrenches ideas out of my head like Monster. I love you, Monster!

and…

  • Where else can we find you online?

:

I AM Disability from Cheryl Green on Vimeo [short satire! it’s SATIRE!]

and…

www.WhoAmIToStopIt.com

www.StoryMinders.com

www.SoundCloud.com/Storyminders

www.Vimeo.com/Storyminders

https://itunes.apple.com/us/podcast/stories-from-brainreels-podcast/id898642299

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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)

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

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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.

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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!

I was introduced to Dave Hingsburger’s blog, Rolling Around in My Head, by my friend Becca (from The Bates Motel). I don’t know how I hadn’t heard of it before though – Dave is HUGE in Canada – he’s like the top disability blogger there. And his blog is worth it  – he covers all kinds of interesting and sometimes unpopular subject material. You know, the stuff that doesn’t reek of the sap that the mainstream gobbles up, the inspiration porn or ‘whoa is me’ type of thick malarkey.

I’m delighted to have him here today and to introduce you to him and his excellent blog.

****

Getting to Know You

 

Your name: Dave Hingsburger

What’s your connection with disability?

I have worked with people who have an intellectual disability for forty years. I have been a wheelchair user for 7 years.

Star Trek or Star Wars? Star Trek

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

I’d live in the UK. I love Northern Wales, my favourite bar in the world is in Manchester, I love the Hoe in Plymouth (that’s not what you think it is) … Newcastle – down by the river … Liverpool a pub that’s older than Canada and has amazing food … I could go on …

What dish would your bring to our community picnic potluck?

Joe’s potato salad (he makes the best), veggie meatloaf sandwiches and a bag of corn to roast

Now That We’ve Been Introduced…

What do you do:

I am the Director of Clinical and Educational Services for Vita Community Living Services, I am also in private practice as a lecturer, trainer and consultant. I’ve lectured in every province but one, every state but one, every part of the UK but one.

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

I did not have a ‘career path’ how I, an essentially shy and insecure person, became a lecturer and author – is anyone’s guess.

Where would you like to see yourself in 5 years?

I would like to still be doing what I’m doing – but I’d like to be working a bit more in advocacy … particularly with the media.

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

That I tried to make a difference

Who or what inspires you?

I am inspired by spontaneous kindness. I cry when happy things happen.

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?
Who you are is who you are and who you are is constantly evolving … make peace with every moment of every day. That is fully within your power.

What do you like about your particular disability?
I could say the parking … but outside that, I like the perspective of ‘outsider’ and I like being forced to THINK about my world, social and physical, in a whole new way.

Any one thing that you wish people would *get* about disability?
It just ‘is’ … that’s all. It doesn’t mean what you think it means, it just freaking is.

What single piece of technology makes your life easier?

My powerchair

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Where else can we find you online? www.davehingsburger.blogspot.com
My books at www.diverse-city.com

dave hingsburger

 

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Other Voices from the Disability Community:

Joshua Miele

Pauline Victoria 

Susan Henderson

Neil Jacobson

Rich Donovan

Joy Elan

Alice Wong

Carrie Griffin Basas

 Tony Candela

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