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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: 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

 

Corbett O’Toole’s voice is proud and strong.

She has fought for disability rights for most of her life – If you look closely enough at montage from the 504 Sit-In, you might see her. She was present for that ground-breaking activism and is still working on projects today. She is a warrior that we in the disability community owe a debt of gratitude toward, for her work in creating a more accessible world for all of us.

Corbett is a mother too. A beautiful video of her dancing with her daughter:

 

She is also an author and recently penned her first book, Fading Scars: My Queer Disability History. 

Please meet Corbett O’Toole

******

Getting to Know You

Your name:   Corbett Joan O’Toole

What’s your connection with disability?  

Wow.  How long did you say this could be?  I’m as old as dirt (65 – which is 85 in crip years) so I have lots of connections.  Been disabled since age 1 with polio.  But I love the disability community so much I’ve added a few more disabilities along the way .

Right from the beginning, my mom propelled me into the sometimes hostile but always interesting nondisabled world with alot of love and support.  I moved to Berkeley in 1973 and discovered disability rights communities.  I have a disabled daughter, and three goddaughters (two of whom have disabilities).

Star Trek or Star Wars?

Hmm hard to answer.  I like the sumptuousness of the Star Wars visuals but prefer the folks who inhabit the Star Trek world (but only post-William Shaftner).

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

Are you paying the way?  Lots of places I’d love to live but I’d need alot of support help because of access barriers.  With unlimited funds for access, I’d like to live on the east sub-Saharan coast of Africa.  With limited access funds, Hong Kong, which I visited briefly and found surprisingly wheelchair accessible.

What dish would your bring to our community picnic potluck?

Edamames in the pods sauteed in sesame oil and sprinkled with garlic chili powder.

Now That We’ve Been Introduced…

What do you do: 

Last year some friends and I started Autonomous Press (AutPress.com). We’ve published 4 books including my own “Fading Scars: My Queer Disability History”. We plan to add 6-12 new books every year.

My days are spent writing, organizing events, creating art, making presentations, gardening and introducing people to each other and to resources.  I know a lot about disabilities, parenting, education, disability history, and intersections between disability, women and queers.  I am always eager to learn more about the worlds of disabled people so I read disabled writers and go to disability events.

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

I moved to Berkeley, California in 1973 just when the disability rights movement was being built.  I got to watch it happen and decided to get involved.  I was in a women’s group with Kitty Cone, who went on to be the chief political strategist of the 1977 San Francisco 504 Sit-in.

I was at the Center for Independent Living with Ed Roberts and Judy Heumann.  I watched the creation of many, now iconic, disability organizations including:  Disability Rights Education and Defense Fund (DREDF), Through the Looking Glass, Computer Technologies Program, Center for Accessible Technology, Bay Area Outreach and Recreation Program, and Whirlwind Wheelchairs.  Over the years I worked with nearly all of these organizations as either an employee or consultant.

In 1990 I stopped officially working due to ongoing fatigue issues and I focused on short term projects. I just started doing projects that interested me and hoped that the money would come to make them happen (which it usually did). I was involved with the Disabled Women’s Contingent for the United Nations Fourth International Conference on Women (1995), the First International Conference on Parents with Disabilities and their Families (1997), Women’s Conferences for the Society for Disability Studies (1998, 1999), Queer Disability Conference (2002), and various gatherings on race and disability (2005, 2006, 2010).

Where would you like to see yourself in 5 years?

Alive.  No seriously, that answer depends on my health.  If healthy, I want to be traveling for 3 months every year to put new sights, sounds and smells into my brain.  The rest of the year I want to make art, write down what I’ve learned, and spend tons of time just hanging out with interesting people.

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

That I kicked ass.  Which, for me, means that I had integrity, passion, and fought for justice.

Who or what inspires you?

I love people with passion, who do what they love no matter what anyone else thinks.  I’ve seen passion in a dance, in a community organizer, in the eyes of a lover.  I love people who are big – who take up alot of space and fill it with love and create joy.  One of my current favorites is Page Hodel who makes a new heart every week and sends it out on a free email list. No one pays her to do it, she does it out of love and shares it for free with the world.

On the disability front, these days I am impressed with the amazing insightful activism of Autistic women.  I read their blogs and know that the world is a better place because they are in it and telling their truths.  Women such as:

I just finished reading Susan Nussbaum’s new novel, Good Kings, Bad Kings, and it is absolutely the best disability novel I have ever read.  It is funny and insighful with a very diverse cast of characters.  The ease of the writing style makes it very accessible to a wide range of readers but the topics are complex and compelling.  A rare feat.  A great treat.

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?

It gets better, ask for help, and don’t give up too much of your life worrying about it.

What do you like about your particular disability?  

Having polio is like going back to the same neighborhood over many years.  It’s always a bit the same and always changing.  While I am not always happy with the surprises (like not walking anymore), I find it’s given me many ways to grow.  As my body’s become weaker, I’ve learned patience (not a gift I was born with), to ask for help (not something I like doing), and to be grateful for the gifts I get each day (even if it’s just being pain-free).

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

That it can be a joyous experience and not really a big deal.  I love the way that people’s bodies move and look in different ways.  I love the way that people turn that into dances, poems, plays, books, and blogs that celebrate who we are. As Neil Marcus says, “Disability is an art.  It’s an ingenious way to live.”

What single piece of technology makes your life easier?

My P-200 electric wheelchair.  It was the first chair designed and made by disabled people and it’s a tank.  It takes me anywhere I want to go.  It can be taken apart into 4 pieces and loaded into a car. And it’s really durable.  Mine is 15 years old and I plan on using it until I die.

Corbett2_2_2

Where else can we find you online?

Because I have an apostrophe in my name, I can be very hard to find online.  So I collected my writings and put them on my website www.CorbettOToole.com

My oral history is at:http://bancroft.berkeley.edu/collections/drilm/collection/items/otoole.html

Website: www.CorbettOToole.com

 

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

 

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

********
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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