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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

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Originally published in 2013

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:

 

I met Alan Muir through Career Opportunities for Students with Disabilities (COSD). In a nutshell, it puts employers and students together (check out their website) in a bright and useful forum. I loved the annual conferences because I always got so much out of it – information on HR, disability, best practices at universities; contacts through the companies represented – I even got to meet some celebrities like Robert David Hall from CSI!

I wish there was something like COSD for professionals with disabilities. But I’m glad it’s there for students and I hope to God people use it to the fullest extent possible because it’s gold. Seriously.

Anyway, that’s COSD and not Alan. Alan started COSD and he runs it. He himself is a charming, very organized and extremely gracious family man. I love that he gave up his career for his wife to pursue hers – and look what happened! That’s love.

Here he is. Please reach out to COSD (the website link is at the bottom too), join, participate and hire!

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Getting to Know You

Your name: Alan Muir

what’s your connection with disability? I am a Little Person Spondylephiseal Dysplasia (SED, for short) dwarfism

Star Trek or Star Wars? Given the choice, I would say Star Wars

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

What dish would you bring to our community picnic potluck? Apple Pie

Now That We’ve Been Introduced…

What do you do: I am Founding Executive Director of Career Opportunities for Students with Disabilities (COSD)

How did you come to doing what you do? How has your career trajectory flowed? My previous life was as a commercial banking lender for 16 years at Chase Manhattan Bank. I left there in 1998, as a Vice President.

My wife, Laura had just finished her degree and certification to become a Certified Nurse Midwife. It became clear that she was not going to find a practice that matched her training in the New York Metro area and we looked elsewhere and found a free-standing birth center in Knoxville. Her brother had also moved to the area a few years earlier, so it was an easy decision to move here.

I came to Knoxville with no job and conducted a 7 month self directed job search, meeting with 75 people about disability. I knew I could not go back to banking without completely starting over. During the search and informational interviews, I met with the then director of career services at the University of Tennessee (UT). He told me of an idea he had to integrate college students with disabilities on the UT campus into his office, since he intuitively knew he was not serving them well. Since neither of us had direct experience in doing this integration, we conducted nationwide research meeting with more than 25 higher education institutions and 35 major employers to identify a model program and to determine the track record of employers hiring college graduates with disabilities. The short answer to those questions was no model program and very little progress, but a lot of interest from the employers.

We came back to UT and established the Disability Careers Office, which Sarah Helm now runs. While that was starting up and becoming successful, we went back to our research partners and formed a consortium of career Services, disability Services and employer professionals to focus on this issue of career employment of college graduates with disabilities. Through initial four year funding from ODEP and subsequent corporate sponsorship, as my only funding sources, COSD grew to its present level of more than 700 higher education institutions and 600 major employers. I work to spread the idea of collaboration between career services and disability services to better serve college students with disabilities and to provide a “continuum of services” to those students, including getting them involved in career development activities. On the employer side, I continually work with them to keep the idea of recruiting college graduates with disabilities at the forefront of their minds when thinking about their diversity hiring programs and initiatives.

Where would you like to see yourself in 5 years? In 5 years, I would like to see COSD be a stronger organization with financial resources to be broader in reach.

Not to be morbid, but what do you want people to remember about you when you’ve gone? Not morbid, at all, as it is a legacy and that is why we are on this Earth for the short time we are. I would like to be remembered as someone who never backed away from a challenge and was always looking to give a hand up to young people with disabilities who are just looking for opportunities to successfully start their careers in an area and interest of their choice.

Who or what inspires you? Most recently, what inspires me is seeing students who had an idea of where they wanted to go, but had no map to get there, suddenly have the opportunity they always wanted. COSD has been the vehicle now for several students to get started. Seeing that “light” go on in a student and to see the discouragement and negativity change to happiness and optimism is what it is ALL about.

 

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? Hmmmm… I think I would say to myself in those days of struggling that life, the world and the work we all do in disability is so much bigger than us, individually. Experiences shape our lives, good and bad, but it is up to us how we use those experiences for the betterment of ourselves individually and also to those we touch, close to us (loved ones, close friends) and the folks we work with and try to help.

What do you like about your particular disability? What I like about my disability is that I make an impression on people I meet, in business situations, social situations or casually in airports and other points of travel. People remember me, hopefully for the better. The bad part of that is that most of the time when someone talks to me like they know me, I have NO idea who they are. I always ask, “So, that my memory is completely refreshed, where do I know you from?”

Any one thing that you wish people would *get* about disability? Strangers, in their zeal to be helpful, not understanding that I am able to do something, reaching for things, opening doors, climbing steps slowly or whatever. Folks will attempt to help and not realize that actually trying to lift me or steady me or some other method of assistance is actually dangerous to them and me. I will ask for help when I need it.

What single piece of technology makes your life easier? Driving a car!!

 

Alan Muir
Alan Muir

Where else can we find you online? Facebook

COSD website – www.cosdonline.org

 

Corbett O’Toole. When I was working at UC  Berkeley, I kept seeing information being sent throughout the Berkeley Disabled Community by a “Corbett O’Toole” – I had no idea who this person was (or even the unusual-to-me name of “Corbett” was male? or female?). I wanted to know this Corbett because the information which was sent forth by this person was always  gold.

And it still is gold.

Corbett O’Toole is not just a cool cat; she’s a fierce cat. She fought for disability rights back in the day – remember this post? Look closely enough at the montage and you might see her in there. Along with her friends, she is someone that I feel we owe a debt of gratitude for creating a more accessible world.

Corbett is a mother too. I posted a video on my facebook page a long time ago of her dancing with her daughter, and oh my Lord but I *love* it:

Ready to “meet” Corbett?

(big smile). Here you go.

******

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 (62 – which is 82 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: 

 

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 (like you Meriah).  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:

 

Elizabeth “Ibby” Grace http://www.tinygracenotes.com/

Kerima Cevik http://autismwomensnetwork.org/category/tags/kerima-cevik

Amy Sesquenzia http://autismwomensnetwork.org/category/tags/amy-sequenzia

Neurodivergent K  http://timetolisten.blogspot.com/

Lydia Brown http://www.autistichoya.com/

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

 

I became friends with Sarah when I worked at UC Berkeley and she was working on her PhD (smartypants!). She was incredibly active in disability activism, awareness and support on campus and within California. By that, I mean she was a part of the Disabled Students Union and the California Governor’s Committee. She  introduced me to many, many people – most of whom will hopefully agree to be featured here themselves!

I love Sarah. She was my yoga and walking buddy at Cal. She and I also spent countless hours talking. She is a solid soul: highly practical, intelligent, but very down-to-earth. She is thoughtful: the type of person who will bake you cookies – she’s also fun: she’s game to try and do most anything (including ravishing campus plum trees!)

I love Sarah. I’m glad you get to meet her now.

****

Getting to Know You

Your name: Sarah Tom

What’s your connection with disability? I was diagnosed with Fibromyalgia at age 17.  This condition means I have fatigue and widespread pain.  My symptoms were quite severe until my mid- twenties.  Currently, I usually  am not bothered by symptoms, but I do have the occasional flare- up.  In order to manage these symptoms, I have  been striving to acheive a better balance with health and well being through yoga and mindful living and also to help others do the same.

Star Trek or Star Wars? Both!  Yoda is one of my favorite characters ever, and I used to watch the Next Generation and Deep Space Nine with my dad when I was growing up.

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

What dish would your bring to our community picnic potluck? cut fresh pineapple

Now That We’ve Been Introduced…

 What do you do: Assistant Professor at the University of Maryland School of Pharmacy in Baltimore

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

I was always fairly good at math, and when I was a sophomore in college, I decided I wanted to do something related to people rather than just numbers.  I discovered that I wanted to be a researcher, and that meant I needed to go to graduate school.  I went to college and graduate school at the University of California, Berkeley, where I studied economics, demography, and public health, I then completed a series of research fellowships in London, Washington DC, Seattle, and Texas.  I am now an Assistant Professor at the University of Maryland School of Pharmacy in Baltimore, where I am an epidemiologist and study aging, insomnia, women’s health, and physical function.

I would say the  most important driving forces of my career have been curiosity about the world and not being afraid to ask questions.  Because of asking questions, I landed several internships while I was in college as well as my first job.  My friend Stephanie Black says you should always focus on what you want to do with your work, and the path will become clear.  True to this advice, I have always tried to focus on what kinds of research questions I want to investigate and how the answers will help people archive better health and well being.

Where would you like to see yourself in 5 years?

I hope to be spending time with friends and family and to be involved in engaging work.

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

I hope to be remembered as someone who lived life fully and inspired others to do the same.

Who or what inspires you? My family, friends, and teachers

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 was very challenging to start to have Fibromyalgia symptoms during the transition from high school to college.  In hindsight, this challenge forced me to learn how to access resources and communicate with people about what I needed, or about the fact that sometimes I wasn’t sure what kind of help I needed.  The skills have also helped me be a better communicator in general.

 

What do you like about your particular disability?

As my friend Ben Chater says, there are lots of inconveniences about having a disability, but I wouldn’t change anything if it meant I wouldn’t have been able to meet the amazing people I have as a result of my disability.

 

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

Having Fibromyalgia means I often have a different schedule that includes sleeping more and taking more time for recovery, but it doesn’t mean I do less with life.

 

What single piece of technology makes your life easier?

Suitcases with four wheels that swivel

Sarah Tom

Where else can we find you online? https://rxsecure.umaryland.edu/apps/people/profile/?pid=5269

Twitter:  @sarahetom

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Other Cool Cat Profiles:

Joshua Miele

Pauline Victoria 

Susan Henderson

Neil Jacobson

Dave Hingsburger

Rich Donovan

Joy Elan

Alice Wong

Carrie Griffin Basas

 Tony Candela

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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 Cool Cat Profiles:

Joshua Miele

Pauline Victoria 

Susan Henderson

Neil Jacobson

Rich Donovan

Joy Elan

Alice Wong

Carrie Griffin Basas

 Tony Candela

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

There a handful of people that have truly made a profound impact on me and my life. How I view the world, what I want to do with my life. People that truly give me energy and strength just by spending time with them. Mentors who inspire me by their own example, and with their humour, honesty and intelligence.

Anthony, “Tony” Candela is one of those people for me.

I met him years ago at a disability employment conference. I think we were sitting next to each other. We became fast friends and started working together on creating an Alliance of Professionals with Disabilities, along with the Silicon Valley Partnership.

Tony taught me more about disability and cross/disability issues and opportunities than probably anyone has. He also introduced me to Pink Martini, taught me how to cook chicken by touch and often made me laugh until I cried. He is a truly  funny, articulate, intelligent guy that I am very proud to call friend.

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Getting to Know You

Your name:  Tony Candela
What’s your connection with disability?

Personal: I am blind. Professional: Rehabilitation Counselor, Disability Employment Specialist, Disability Program Administrator

Star Trek or Star Wars?

Star Trek

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

Italy

What dish would your bring to our community picnic potluck?
Pizza

Now That We’ve Been Introduced…

What do you do?
Administer a residential blind rehabilitation facility run by the VA

How did you come to doing what you do? How has your career trajectory flowed?
Caseload carrying rehabilitation counselor to supervisor to manager to another manager position to a national employment program specialist, to a State agency administrator to current position (35 years)

Where would you like to see yourself in 5 years?
Working as I am now, but with retirement in sight.

Not to be morbid, but what do you want people to remember about you when you’ve gone?
Dedicated to what he believed in; never compromised his most cherished values.

Who or what inspires you?
Courageous people who believe in right and wrong

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?
Lighten up

What do you like about your particular disability?
Insulates me from visual prejudice

Any one thing that you wish people would *get* about disability?
That we are all normal human beings with all of our foibles and bright spots

What single piece of technology makes your life easier?
Speech output software for computer and other devices

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

Where else can we find you online? You can Google me.
Tony Candela

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Other Cool Cat Profiles:

Joshua Miele

Pauline Victoria 

Susan Henderson

Neil Jacobson

Rich Donovan

Joy Elan

Alice Wong

Carrie Griffin Basas

 

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Fabulous sale alert! Starting today, through Monday, May 27th, Tea Collection is offering $15 Girls Dresses, $12 Girls Leggings and $12 Boys Tops. Stock up on comfortable and durable tops for boys. Mix and match adorable girls’ legging and dresses for endless outfit combinations. Don’t miss your chance to take advantage of this amazing sale from Tea Collection! Happy Shopping!

 

I met Joy about 10 years ago. I was selling jewellery at a Tina Marie concert. Joy came around with a friend – I noticed their signing and hearing aids and got all excited.

Our paths definitely cross. We live close to one another, our first born children are almost the same age, we are both smack-dab in between the Deaf and Hearing worlds. Her book of poems is Signs of Life: Past, Present and Future – and it is beautiful.

Joy is my homegirl and I’m delighted to introduce her to you!

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Getting to Know You

1.     Your name:

Joy Elan

2.     What’s your connection with disability? 

I’m hard of hearing

3.     Star Trek or Star Wars? 

Star Wars

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

That’s easy, Paris

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

Water

Now That We’ve Been Introduced…

1.     What do you do?

My day job is at a recreation center for Oakland with special needs students and I love it. My all day/everyday life is writing and performing poetry.

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

I’ve always loved writing and I used to write stories. I became good at writing poetry in middle school and high school. I used to write poems as a journal piece. One day a friend suggested I publish a book, so I composed my poems into a book and got it published a year later.

While I was trying to sell my book at poetry open mic, I learned how to perform my pieces and write new pieces that were performance-ready. Since I’ve been around other spoken word artists, my career has taken off. I’ve been requested to perform at shows and events. My book sales have increased tremendously when I sell them personally.

Currently, I’m finishing up my second book and getting ready to have a book signing party since I wasn’t able to when I published my first book.

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

In five years, I see myself published with at least 3-4 books and working at a community college. I really want to teach but until then, I have to use my God given talent to pursue my dreams.

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

You’re not morbid at all because I’ve been thinking about this. I want to be cremated because I don’t want people’s last memory of me to be in the casket. I want them to remember me for my kind words, my smile and my thinking.

The blessing about publishing a book is that my words will always be here after I’m gone and people will always get a chance to “know” me. Remember that I chose to pave the way for other disabled artists and people so they wouldn’t have to rely on someone else.

5.     Who or what inspires you? 

My mother and daughter inspire me. My mother is the reason why I am who I am and my daughter is the reason why I get up everyday.

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?

Nothing! I was raised to believe that God made me this way for a reason and I always knew I had a higher purpose. My family told me everything I needed to hear to get me to overcome my struggles. One thing I always remembered and I always tell this story, my grandfather told me something I never forgot.

I came home crying because the “regular” students did not want to play with me. I must’ve been about 9. He said, “Have you ever been called a nigger?” I replied no. He said, “I’m from the South where they called us that in public and there was nothing we could do about it. Just because that’s what they called me didn’t mean that I had to respond to it. So unless you’ve been called that, then don’t come crying because someone wouldn’t play with you because of your hearing aids. They weren’t meant to be your friend, anyway.”

That shaped my life forever and I went through life proving people wrong. That’s why I wouldn’t go back because I was trained.

2.     What do you like about your particular disability? 

I love that I can wear different color earmolds and I can communicate with my hands. I can hear too so I’m in between both the Deaf and hearing worlds.

What’s crazy is I love music and I’m blessed to be able to hear people sing and the instruments.

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

It’s funny because I always applied the X-Men concept to disability. People fear what they don’t understand and sometimes “regular” people need to be accepting of people that are different.

My hearing loss didn’t affect my ability to think and to graduate from UC Berkeley and Stanford University. I have a family and I published a book. I’m no different from anyone else and although we’ve progressed, we’re still behind in the way people think about us. Talk to us and you’ll be amazed how wonderful we are and how our interests are similar to other people. I always say you can’t put me in a box and I love to be around people, no matter if they’re disabled or not, LGBT, their religion and etc. If I can accept people for they are, I want people to accept me for who I am.

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

My hearing aids. Without them, I’m lost. I love music so I’m blessed to be able to hear people sing and the instruments.

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Connect with Joy on facebook: www.facebook.com/authorjoyelan

Her website: www.joyelan.webs.com (her book is also for sale there)

 

 

Joy Elan

I met Pauline years ago when I was working with my friend Tony Candela on starting up the Alliance of Professionals with Disabilities, in partnership with folks from the Silicon Valley. Pauline was part of that venture. I liked working with her – she’s pragmatic, skilled, articulate and intelligent. And very interesting.

Long time readers of this blog may remember when I wrote of Pauline before – that post (which includes many videos) is here.
Mahalo Nui Loa, Pauline!
******************

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.

 

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Website: www.PaulineVictoria.com

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

paulinevictoriaaughe

 

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