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Voices from the Disability Community

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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

Welcome to “Voices from the Disability Community: – the series that introduces interesting people with various disabilities by asking the same set of questions to everyone. The point of doing that is share the diversity within the disability spectrum and experience, and get to know some cool people.

This week I’m delighted to introduce Milly Diericx to you!

Getting to Know You

  1. Your name: Milly Diericx
  2. What’s your connection with disability?  I have Lupus Eritematosus Systemicus (LSE).
  3. Star Trek or Star Wars? Star Wars, definitely
  4. If you could live in any other country for 2 years, where would you go? England
  5. What dish would your bring to our community picnic potluck? Truffle Rissotto or flourless chocolate cake.

Now That We’ve Been Introduced…

  1. What do you do: I’m an Energy Therapist, hypno-therapist and author.
  2.  How did you come to doing what you do? How has your career trajectory flowed?

I have always had an interest in healing, and in energy.  Then I got diagnosed with Lupus and really got  into trying out healing techniques of the alternative kind, and studying the ones that worked best for me, so I could continue to heal myself.  It was a successful experiment, I got my Lupus into remission, I’m off medication and have been for about five years.  After being well for a while, knowing it had stuck, I followed a friend’s advice and wrote the book about my story: the diagnosis, the disease, the things I tried, how they worked, etc.  My book is a guide for those looking for better health and wellbeing to delve into the world of alternative healing with a map, my map.  After all, there are a lot of things being offered out there and it can be daunting at first.  Knowing someone else’s experience in the matter can be very helpful.  I hope.

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

I would love to see myself speaking and writing more books, getting the message of hope for chronic illness sufferers out there, helping as many people as possible to feel better and live productive and happy lives, to thrive.

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

That.  That I helped some of them feel better, that my life and illness had purpose and reason.

  1. Who or what inspires you?

I’m inspired by people who have come back from apparently hopeless situations changed, with greater insight and a desire to be of service, like Anita Moorjani.

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?

There is hope.  Do not despair, this will get better and even be a meaningful part of your life.

  1. What do you like about your particular disability?

I like that it’s really tough to manage.  It changes on me all the time, my body gets used to the healing techniques and goes off on tangents.  It’s always evolving, and so it keeps me studying and researching, on my feet as it were.  I can never take it for granted, and that keeps me growing constantly as a person.

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

Mainly that we don’t choose it, we are not lazy or feigning our symptoms.  We might look well and still feel terrible.  I would like them to get the incredible challenge we are constantly faced with, not only to survive but to try and fit in with “regular” society, and have “normal” lives.  Our culture is not designed for people with disabilities and when you have them you are always a little on the outside looking in.  It’s tough.

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

I’m not a big fan of technology, but faced with that question, I would have to say the Internet and laptops.  They give me a way to communicate with others like me, even if some of them are too sick to leave their home or live in different countries.  Laptops have made research and writing easier.

and…

Where else can we find you online?

May the force be with you!

 

Welcome to “Voices from the Disability Community: – the series that introduces interesting people with various disabilities by asking the same set of questions to everyone. The point of doing that is share the diversity within the disability spectrum and experience, and get to know some cool people.

This week I’m delighted to introduce Steve Brown to you!

Getting to Know You

  1. Your name: Steve Brown
  2. What’s your connection with disability? 

What a big question. Highlights: I have a disability that showed up when I was five—I limped for no apparent reason—called Gaucher disease (GD). When I was diagnosed, in the late 1950s, no one knew what caused GD (http://www.gaucherdisease.org/); now they know it’s a genetic, metabolic disorder related to a low-producing enzyme.  I also became involved in the disability rights movement in the early 1980s after being discriminated against in an employment situation.

This led to becoming involved in the first Oklahoma independent living program, now called Progressive Independence, and other Oklahoma, regional, and national disability rights activities. In 1990, I moved to California, where I started to work at the World Institute on Disability and where I met my wife, Lillian Gonzales Brown, who also has a disability. In 1993, we moved to southern New Mexico and there we created the Institute on Disability Culture. We have moved the Institute from New Mexico to Hawaii and now to California.

In Hawaii, I worked at the Center on Disability Studies at the University of Hawaii (UH), where I was involved in several programs, in the start-up of the Review of Disability Studies: An International Journal, and in teaching Disability Studies courses. I still teach at UH, now all online from California, a course I created called “Disability History and Culture: From Homer to Hip Hop.” And, finally, I have other family members, and many friends with disabilities.

  1. Star Trek or Star Wars? I’m not passionate about this question. I like both when they’re good.
  2. If you could live in any other country for 2 years, where would you go?

Probably France or Peru. France, because I’ve had a passion to go there since I was a kid and have not made it yet, and because it’s close to a number of other countries; Peru because Lillian is half-Peruvian but I haven’t made it there yet either.

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

I’ve always been known for bringing potato chips and–no matter how healthy the group claims to be—I rarely return with any. My wife, on the other hand, bakes up a storm of delicious desserts. So it may be that…

Now That We’ve Been Introduced…

  • What do you do:

Officially, I’m retired as a Professor of Disability Studies from UH. But I continue as Affiliate Faculty, teaching the course discussed before. In the past couple of years, I’ve also served as a Fellow for the Association of University Centers on Excellence in Disability Diversity and Inclusion Toolkit (http://www.implementdiversity.tools) and a trainer about emergency preparation for people with disabilities for an organization called BCFS (http://www.bcfsemd.net/). The Institute on Disability Culture also continues, and on it I blog via a long-time series of postings I’ve done called Manifestos (http://www.instituteondisabilityculture.org/manifesto). In 2015, I published my latest book, about disability rights pioneer Ed Roberts, geared for Middle Grade readers, called Ed Roberts: Wheelchair Genius (https://www.amazon.com/Steven-E.-Brown/e/B004H9QX7Y/ref=dp_byline_cont_book_1). Other books are also available via this page.

I’m refocusing on my writing this year.

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

In the early 1980s, I graduated with a doctorate in history from the University of Oklahoma (OU). Jobs for historians were scarce and I had a one-year lectureship from OU to teach introductory history courses. During that year I had two students with disabilities who connected with me and introduced me to what was then called the Independent Living Project (ILP). I began to do some volunteering for the ILP. When, the summer after my lectureship ended, I still didn’t have a job I was thrilled when my department chair called with a lead on writing a history of a company in Tulsa.

I was overjoyed and threw myself into getting that job even though it was not my specific field—but it was a job! Verbally, I was hired. But when the company learned I used crutches they decided I didn’t have the stamina, energy, and ability to research and write a book. I protested in every way I could but in those pre-ADA days, there wasn’t a lot I could do. I started volunteering every day at the ILP and when a new position opened that fall I applied and got it and became a skills trainer, peer counselor (in the language of the time) and community organizer.

It was an incredible job, with wonderful people and mentors who I’m still friends with, but we walked out in 1984 over the issue of what was then called “consumer control.” It was a radical, and at the time, well known action, nationally. Three years later I was hired to become the director of the project and oversee it’s becoming a “consumer-controlled” organization, which meant at least 51% of the Board and staff were individuals with disabilities. At the same time all this was going on I also became interested in the idea of “Disability Culture” and the rest is detailed in other responses and in my books.

  1. Where would you like to see yourself in 5 years? As a full-time writer, or at least as much time as I’d like to be focused on writing.
  2. Not to be morbid, but what do you want people to remember about you when you’ve gone?

That I did my best to impact the world positively and that included “Promoting Disability Pride.”

 

  1. Who or what inspires you?

I am inspired by a lot of people and things. From Al Kaline, one of my first heroes, a baseball player, who constantly injured himself, so I knew he, like me, knew about pain; to my daughter and her husband, who are two great people raising 2 incredible children; to my wife, who is the most heart-felt person I know; to the amazing advocates, young and older, who are constantly changing the landscape of disability here and internationally, to those I have called “Martyrs” (http://www.instituteondisabilityculture.org/martyrs-the-poem.html), individuals with disabilities (mostly), many of whom have given their lives to the cause of disability rights; to my parents, who made sure I lived a typical life, instilled a sense of justice and independence and wanderlust; to my sister and brother, for the lives they’ve created; to the ocean and mountains and sun.

And after I wrote this response, I kept thinking of more things and people—like I said lots of things inspire 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?  That I would live much longer than I anticipated and that, in time, because of my relation to disability and disability rights I would travel the world, meet all kinds of fascinating people—many I would call heroes—find work I loved and meet an inspiring woman; incredible daughter and her family—so, there are many great reasons to hang in there.
  2. What do you like about your particular disability? It has probably been my greatest teacher.
  3. Any one thing that you wish people would *get* about disability? It’s everywhere, it always has been and always will be and just like any other aspect of life it has ups and downs, but it is a shade of the rainbow that colors all our lives, individually and collectively and if we recognize disability as such, instead of trying to eliminate it or overcome it or change it we can adapt to its presence in our lives, individually and collectively, and understand it is simply part of who we (individually and collectively) are, and we can celebrate it as a part of each of us and the world.
  4. What single piece of technology makes your life easier?

Computers—I would not be able to write, teach, or do a lot of the other work I’ve done over the years without it—I bought my first computer in the late 1980s—it didn’t have a hard drive, I didn’t have a printer, and it used large floppy disks—but I started writing again, because I had it and it didn’t exacerbate the arthritis in my hands like typing or handwriting (which no one, including me, could read…)

and…I’ve benefitted from using manual and motorized wheelchairs, a “chairtopper,” and accessible vans.

  • Steve BrownWhere else can we find you online?

http://www.instituteondisabilityculture.org

 

Welcome to “Voices from the Disability Community: – the series that introduces interesting people with various disabilities by asking the same set of questions to everyone. The point of doing that is share the diversity within the disability spectrum and experience, and get to know some cool people.

This week I’m happy to get to know Eva Sweeney along with you!

____________________________________________

Getting to Know You

  1. Your name:  Eva Sweeney
  2. What’s your connection with disability? 

I was born with cerebral palsy, which for me effects all my muscles. I use a wheelchair to get around and I’m non-verbal so I spell out what I want to say on a letter board.

  1. Star Trek or Star Wars? 

Uhhh, neither lol

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

I have always wanted to go to Spain. I took Spanish all through high school and I studied artists from Spain, so I think it would be cool to visit.

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

Cheesey fries. My favorite!

Now That We’ve Been Introduced…

  1. What do you do:

I’m a writer, sex educator, and I have made a documentary. I generally write about sexuality and disability, being queer and disabled. My documentary explores the relationships between people with disabilities and their aides. It’s called Respect: The Joy of Aides, and you can rent or buy it on Amazon. I found most of the media representations of these relationships focused on abuse and being taken advantage of. While that is super important to talk about, I wanted to show the other side. I’m also a consultant for the ABC show Speechless and that has been an awesome experience!

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

When I was a teenager and just coming out and also just becoming sexually active, I looked for information about being disabled and having sex, and found no good resources. So with the help of a friend I created a small guide titled, Queers on Wheels. It discussed how to deal with dating when you need assistance with everyday things, choosing and adapting sex toys, and hiring and maintaining aides who respect all of who you are. I then toured the U.S. giving workshops on these topics. Now I don’t have the energy to really tour, but I still write about it for magazines and blogs. There is way more awareness now, too, so it is fun to collaborate with other folks doing similar work!

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

I would love to be working at a feminist sex shop helping people with disabilities choose all kinds of sex toys. I would also still like to give workshops.

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

I would like to be remembered for my awesome sex and disability advocacy work.

  1. Who or what inspires you?

Not to sound inspiro-porny, but when I give workshops and middle aged people with disabilities say that was the first time they talked about sex in such an open way, that inspires me to keep doing this work.

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?

I really wish I had taken advantage of UC Berkeley’s disability program. I went to a school in Los Angeles, which was okay, but I would have really benefitted from the life skills taught in the program.

  1. What do you like about your particular disability?

That it weeds non-genuine people out of my life (for the most part). Because my disability is so “severe” and I communicate in a different way, people have to take the time to get to know me. Without my disability, I might have more casual friends and acquaintances, but instead I have really good close friends who get me.

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

Yes. I really wish the general public would understand that even though someone is non-verbal, they can still understand and communicate.

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

I would definitely say my communication system, which is just a laser and a board with the alphabet and common words, not only makes my life easier, but is vital to my well-being.

and…

  • Where else can we find you online?

Voices from the Disability Community: Eva Sweeney is a 33-year-old genderqueer disabled female who works primarily as a freelance writer and sex educator Her topics include disabilities and sex, gender, and queer culture. She is also the creator of a documentary called, Respect: The Joy of Aides. She currently lives in L.A. with her service dog Coral, and her mischievous cat RomeoDocumentary: http://www.joyofaides.com/index.html

Facebook: https://www.facebook.com/eva.sweeney

Patreon: https://www.patreon.com/cripadvice

Welcome to “Voices from the Disability Community: – the series that introduces interesting people with various disabilities by asking the same set of questions to everyone. The point of doing that is share the diversity within the disability spectrum and experience, and get to know some cool people.

This week I’m delighted to feature my buddy, Carly! Carly and I have been friends (who haven’t met in real life yet) since..when? I think that whole blowout with The Mighty? I distinctly remember messaging her while I was in Cambodia and being really grateful for her voice. So now you get to meet her, too!

________________________________________________

Getting to Know You

  1. Your name: Carly Findlay
  1. What’s your connection with disability?  I live with a disability, though I didn’t identify with having one until my late 20s. My disability niche, if you like, is appearance diversity – living with a facial difference. I have a rare, severe, painful genetic skin condition called Ichthyosis.
  1. Star Trek or Star Wars?   Ha! I have never watched either. My husband is a big Star Wars fan. He wanted a Star Wars themed wedding. I said no. He wore a Star Wars Disney pin on his lapel and Yoda socks with ears. He encourages me to watch Star Wars but so far I’ve avoided this.
  1. If you could live in any other country for 2 years, where would you go? I love the UK. I love London – the cool weather, culture, food and shopping is my thing! I’ve got a British passport so I could actually do it.
  1. What dish would your bring to our community picnic potluck? I made a fantastic chicken dish from Yottam Ottolenghi last year – it had rice, cardamom and berries in it and it was delicious. I’d bring that. I love to cook.

Now That We’ve Been Introduced…

  1. What do you do: I write and speak about disability, chronic illness and appearance diversity. I run Facebook groups for bloggers with disability and chronic illness, and also people living with Ichthyosis. I also connect people with Ichthyosis, give advice to new parents and adults living with the condition. In 2015 I organised Australia’s first Ichthyosis meet. I am also a wife, a bad housekeeper but great cook, host a podcast, love to travel, love live music, enjoy reading and devote my life to fashion.
  1. How did you come to doing what you do? How has your career trajectory flowed?

I’ve enjoyed writing from an early age, writing stories and reading a lot at school. I always wanted to be a journalist but I grew up in a small rural Australian town which didn’t have any universities with media courses nearby, and my parents hesitated to send me away to a city university because of the expense and my health.

I studied a Bachelor of eCommerce at a local university, and then moved to Melbourne for work when I was 21. Two years after that, I commenced a Master of Communication (and took seven years to complete it because of full time work and my health). While I had been blogging on and off since 2001, it was never for professional reasons. Midway through my Masters, I started my current blog, then called Tune Into Radio Carly, so I could implement some of the things I’d learnt in my studies and create a portfolio.

Initially I didn’t write about living with Ichthyosis but once I did, it received such a great response from readers that I decided to write more. I pitched myself to a disability focused government website and wrote for them for a few years. One of the pieces I wrote for the government was republished on a large Australian women’s website, and that was the start of writing for mainstream media.

I have won a few media awards, one of which allowed me to do a course about writing and pitching for magazines. And that gave me the confidence to pitch to online publications. Many articles have been picked up because an editor read my blog. And I dabbled in speaking at my day job, which I let people know about, and now I receive requests to speak at a range of events.

Because of my blog I spoke at a university overseas, and was the speaker before Australia’s first female Prime Minister, Julia Gillard, at an event in Melbourne last year. I have recently dropped my day job hours to part time so I can write and speak more, and this has been quite successful so far!

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

I’ll still be writing, hopefully for international media. I want to be doing regular TV and radio, be on my way to completing my doctorate, have written a memoir and a children’s book (hopefully best sellers!), living in our own home – no longer renting – and planning another overseas trip.

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

Every so often I get messages like this:  “Because of you I caught the train, went to a very busy shopping centre, caught the train home again… in a sundress.” “After reading your posts and blogs and responses I feel that I now have the strategies to deal with anything that comes my way and I have an insight to how others feel/react. Thank you for empowering me

I hope I can still empower people through my words – giving them permission to love and have confidence in themselves while living with Ichthyosis, a facial difference or a disability.

  1. Who or what inspires you?

I admire people who keep on with their disability activism despite all of the challenges: those who shoosh them, people who don’t understand it, harassers, a crowded mediascape and the daily challenges of living with disability. People like you, Alice Wong, Dominick Evans, Vilissa Thompson, Jax Jacki Brown, Michelle Roger and Elisha Wright (and countless others), and of course, the late Stella Young. I also admire resilient feminists like Clementine Ford, Celeste Liddle, Lindy West and Tara Moss, and online creatives like Pip Lincolne, Emma Gannon, Liv Purvis and Dawn O’Porter.

About Disability

  1. If you could say something to yourself in the past – that is,

the you that was really struggling with something related to disability – what would you say? “It gets better. You will find your tribe. The thing that sets you apart (your appearance) will be the thing that brings you success.” I have written messages to my younger self here http://carlyfindlay.blogspot.com.au/2013/10/a-letter-to-little-ones-born-with.html.  and here http://carlyfindlay.blogspot.com.au/2016/12/if-10-year-old-me-could-see-my-life-in.html.

  1. What do you like about your particular disability? My skin heals very quickly when I fall over or cut myself. It renews very quickly – 28 days worth of skin in one day! Today I fell down the stairs and it throbs and I’m miserable, but I know I’m a couple of days, the cuts will be healed. Also, this means I look really young.  I’m 35 but could pass for 25. Adam says when I’m 100, it will look like he’s married to a 50 year old.
  1. Any one thing that you wish people would *get* about disability?

That it’s nothing be ashamed about, or to be hidden. Disability is a part of our identity and culture. Being involved in the disability community feels like home.

Also – I’d love it if parents would listen to the experiences of actually disabled people. I’m always so thankful when a parent writes to me to thank me for my work.

  1. What single piece of technology makes your life easier? My iPad. I do everything on it. Write, listen to podcasts, reply to emails, read books, watch TV. I love that what I write on my iPad is synced with my iPhone – I always have my writing with me.

and…

  • Where else can we find you online?

Carly Findlay: blogger, appearance activist. Image is of a woman holding a cup, smiling broadly. She has curly brown hair and pink skin.Blog: Carlyfindlay.blogspot.com

Facebook: facebook.com/tune.into.radio.carly

Twitter: Twitter.com/carlyfindlay

Instagram: instagram.com/carlyfindlay

Podcast: refreshmentsprovided.com

 

Welcome to “Voices from the Disability Community: – the series that introduces interesting people with various disabilities by asking the same set of questions to everyone. The point of doing that is share the diversity within the disability spectrum and experience, and get to know some cool people.

So, without further ado, please meet Sarah Levis!

________________________________________________

Getting to Know You

  1. Your name:  Sarah Levis
  2. What’s your connection with disability?  Physically disabled; long-time volunteer and former employee in Ontario’s developmental services and special education sectors; disability advocate and award-winning disability blogger.
  3. Star Trek or Star Wars? Star Wars, ultimately, but it’d be difficult to live in a world without both!
  4. If you could live in any other country for 2 years, where would you go? Ecuador
  5. What dish would you bring to our community picnic potluck? Fancy cheese and crackers.

Now That We’ve Been Introduced…

  1. What do you do: I’m a disability advocate with over 20 years experience (volunteer and paid) in Ontario’s developmental services sector (support for intellectually disabled people.) I am also a small business owner, writer and hired nerd (website development, social media management.)

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

I decided when I was 15 that I wanted to be a social worker. My mother told me that I needed to get some volunteer experience in that field, so I answered the call for youth representatives on the steering committee that was investigating the feasibility of amalgamating the children’s services in my county, and sat on the amalgamated board for a year.

I also joined Community Living’s “Circle of Friends” program, and was matched to be a friend to an intellectually disabled women; we are still friends. I discovered that I liked volunteering with Community Living, which is a support agency for intellectually disabled individuals. I did a cooperative education placement with them and sat on their board. When I went away to Queen’s University, I volunteered with a similar agency.

In 1999 I had a small stroke because of an arteriovenous malformation. The stroke didn’t do permanent damage, but my life was on hold while I waited for a surgery date to treat the AVM. I lived at home and volunteered at Community Living. I started to think, “I like this work. I’m good at it. I could do this as a job.”

I applied for the Developmental Services Worker program at Loyalist for the fall; in Ontario, service agencies like Community Living prefer that applicants have the DSW. However, after a craniotomy in May to treat the AVM, I had a much larger stroke that wiped out my left side, and I spent the next 6 months doing in-patient stroke rehabilitation. I wouldn’t go to school until 2002, and it took me two years to graduate from a one-year program.

But I was glad that I got a chance to go to school as a disabled person, learning about how to support disabled people. I thought about the material in ways that I don’t think I would have otherwise, and I see now that ideas like ableism and privilege were bothering me even then, even though I didn’t have the language to talk about them.

The school and I disagreed on a number of philosophical points, sometimes very strongly. At 25 years old, I was among the older students in the class, and I’d had been volunteering with Community Living for ten years – I was fiercely protective of it and the way it did things, and dug in my heels at perceived slights towards agency supports in general.

For much of it, I now see what the teachers were trying to say, and know that I would not now disagree nearly so much when they talked about how, for example, natural supports are preferable to agency supports (although I think that this is a simplistic expression of an idea that can be quite complex in practice.)

I was told by many people that I wouldn’t get a job in my field, granted that I walk with a cane, have almost no function in my left hand, and don’t drive because of a seizure disorder.

But 2004 started a period where I worked several jobs in developmental services, education, and mental health. However, by 2011 the work dried up for me, and I was jobless for over a year. Social services work was changing – the people that agencies were hiring needed to do everything, including highly physical support work and driving. I couldn’t do the lifting and fast service involved with retail. As the long period of unemployment stretched on, I started a blog to kill time and to say some things that I needed to say about disability. I taught myself social media to promote “Girl With The Cane” and people eventually started to read.

When I finally did get another job with a website start-up doing customer service and administrative work, I kept blogging. I had also started my own small business, where I did writing and social media management.

I’d always liked to write. I’d written a small book of essays (now out of print) about having the stroke, and local people had seemed to like it, but I’d never considered that people might like what I had to say about disability on a large scale.

I’ve never made much money with the writing, but I don’t really care – I’ve met so many interesting people through the blog, and learned so much that training and school had never mentioned, that writing the posts is totally a labour of love.

3. Where would you like to see yourself in 5 years? I’d love to be supporting myself with my writing and advocacy work, but I know it’s very difficult to do.

4. Not to be morbid, but what do you want people to remember about you when you’ve gone? That I didn’t let my disabilities stop me from doing what I wanted to do, or use them as an excuse to not to what I needed to do.

5. Who or what inspires you? At the risk of sounding inspiration-pornish, the people that I’ve supported inspire me.

Some of them have been young adults making difficult life decisions without support networks that I took for granted at their age. Others, adults, grew up in Ontario’s system of institutions, most likely enduring decades of abuse that they may not even know how to talk about, only to find themselves having to start new lives with new support services in towns where they knew no one once the institutions closed. I find their courage deeply moving.

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? I really struggled with how people reacted to my as a disabled person. For example, when I was doing in-patient stroke therapy in Ottawa, I met people from my town while shopping in a mall, using my wheelchair. I broke off the encounter almost immediately; I was convinced that I could see pity in their eyes, and it infuriated me so much that didn’t use my chair in my town once I returned home.

I’d tell that girl now that she gave up an awful lot of her power that day because of something she fancied she saw in someone’s eyes. I’d talk to her about internalized ableism, because she wouldn’t have known about that. I’d tell her that she can’t control how her disability makes people act around her, but she can control her reactions, and whether her response to other people’s dehumanizing treatment (intentional or unintentional) is to let it make her small and meek or full and assertive of her right to be treated with the dignity that she deserves.

2. What do you like about your particular disability? I have been a writer from an early age and I love to read. I’m sure I would have found a way to do both if my stroke had affected my ability to do those things. However, a few days after my craniotomy, I tried to read a book, and I couldn’t make the words make sense, and I *panicked*. I am grateful that the damage from my stroke is 98% physical, that I have no accompanying pain (post-stroke pain can be terrible), and that I can read and write the way I always did. I’d manage if I didn’t, but I’m glad that I don’t have to.

3. Any one thing that you wish people would *get* about disability? People tend to dehumanize disabled people in a variety of ways. They assume that it’s okay to force help on us, to touch us without permission, to ask intrusive questions without a second thought, to assume that we don’t need access to sexual safety options and reproductive rights because we are non-sexual…I don’t see why it’s so hard for non-disabled people to see that disabled people are, first, people, and that if you wouldn’t treat a non-disabled person in a certain way, then you shouldn’t be treating a disabled person that way either.

4. What single piece of technology makes your life easier? Electric toothbrush. My stroke affected my dominant hand. I can do everything now with my non-dominant hand that I used to do with my dominant hand, but my non-dominant hand will always be a little weaker. My teeth are better cared-for when I use an electric toothbrush, as opposed to the manual brushes that I used pre-stroke.

sarah levis: blogger, activist, social worker

 

Where else can we find you online?

 

 

 

 

Welcome to “Voices from the Disability Community: – the series that introduces interesting people with various disabilities by asking the same set of questions to everyone. The point of doing that is share the diversity within the disability spectrum and experience, and get to know some cool people.

So, without further ado, please meet Frank Verpaelst!

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Frank Verpaelst

Getting to Know You

  1. Your name:

Frank Verpaelst

  1. What’s your connection with disability?

I was born with dwarfism.

  1. Star Trek or Star Wars?

Definitely BOTH!  (Sorry, no way to split these two apart.)

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

Definitely one of the Nordic countries, where they have some pretty humane social programs and attitudes.

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

Tough choice:  Either Shepard’s Pie, or, a nice big pot of vegetarian friendly Lentil soup.

Now That We’ve Been Introduced…

  1. What do you do: 

I’m a semi-retired and mostly stay at home blogger, writer, public speaker, artist and folk musician.  Of course, that all happens when I’m not busy being a father and husband.

  1. How did you come to doing what you do?

All of my recent activities are self-taught, and gained through a life of learning what I love to do most.

How has your career trajectory flowed?

As crooked as my scoliosis.  I’m a recovering computer geek, who has officially given up working for business people.

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

Right where I am now, at the end of my keyboard, communicating with the world about how awesome many people with disabilities are. Except, with more book sales.  LOTS more! (Just $40,000 per year would be perfect).

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

Promote my books, so that I can keep taking care of my family after I’m long gone.

  1. Who or what inspires you?

Zen Buddhism, mostly the aspect that greed and human desires create most of our suffering. Success in life is not the point of it all.  Taking care of each other, and the planet, is what matters most.

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?

Don’t be your own worst enemy.  Don’t believe the illusion society tries to impose on us. EVERY person has abilities, everyone has limits.  Avoid your “impossible to change” limits. Find your talents, what makes you happy, and develop those aspects.

For example: As a dwarf with serious osteoarthritis and scoliosis, being an NBA player was not likely to happen.  But as a lover of sports, I chose to coach Lacrosse instead to feed that aspect of my soul.

  1. What do you like about your particular disability?

Being a very short and thought of as disabled man, I get underestimated and discounted ALL the time, even to the point of ridiculousness.  Then BLAMO, people wake up and realize:  Hey, this guy can DO stuff!

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

I hinted at it earlier:  Disability is an illusion.  Because the majority of society is superficial and materialistic, THAT should be my measuring stick?  I don’t think so!

We are biological units travelling in the universe.  Beat up VW Bug, fancy sports car, family-style wagon, whatever: You will never understand the beautiful spirit of who is driving the chassis, until you talk to them, and go for a drive with them.

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

OH, my lovely computer. It feeds and unlocks the genie inside of me, and leverages all of my creative talents like nothing else.

and…

 

Frank Verpaelst

 

Where else can we find you online?

http://www.patreon.com/gutsydwarf

Peace in oneself, peace in the world.(Thich Nhat Hanh)

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Voices from the Disability CommunityAre you interested in being featured in this series? Fantastic! Send me an email (below)  [contact-form-7 404 "Not Found"]

Getting to Know You

  1. Your name:  Rich Donovan
  2. What’s your connection with disability? Total + I Am PWD
  3. Star Trek or Star Wars?  Star Wars
  4. If you could live in any other country for 2 years, where would you go?

China – so much opportunity for growth while avoiding western mistakes.

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

Ribs – the process is messy, but the result is worth it.

Now That We’ve Been Introduced…

  1. What do you do: I run a research and investment company that Translates Different into Value for global businesses, governments and investors. Disability is our muse.
  2.  How did you come to doing what you do? How has your career trajectory flowed?

I started my career with Citibank in Risk Management. I found my way to Columbia Business School and a job as a Portfolio Manager with Merrill Lynch where I managed $6B in various capacities. While at Merrill, I founded Lime – a non-profit recruiting firm connecting PWD to great firms – and realized that the world was massively ‘under-valuing’ disability as a market. Over the last 8 years under the Return on Disability brand, we built the data, process, and tools that our customers need to generate value in the disability market. We are now prepping to apply our model to women, race, LBGTQ and other non-traditional markets.

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

Having proven a model in business and investing where serving customers ‘outside the norm’ leads to out-performance for investors and better lives for people, our business is profitable, on every continent, and in the Inc. 5000.

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

He influenced others to change their actions to change their lives.

  1. Who or what inspires you?

When there is clear value in someone (or a billion someones) that most cannot see, but strikes me as obvious. Opportunities like that are not supposed to exist, yet here we are. If that doesn’t excite you, check your pulse.

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?

I used to really struggle with the disability “community” – these groups that claim to represent PWD, mostly condition-based charities. Their messages, agendas, and results did not match (even a little bit) the data underlying PWD that our research was uncovering. After sitting on a few boards and trying to work with a few of them, I realized the total disconnect between the “community” and the market of PWD. The groups are stuck on a ‘funding treadmill’ where their survival does not allow them to take the risk required for change to occur. Ironically, the ones that avoid change are going to go away. Real change in disability (and we need/want it) will come from outside the “community” via intentional disruption. I wish I understood this more clearly 10 years ago. I’ve been trying to help the “Community” change, when I should have been disruptive from day 1. Ironically, most would say that I’ve been very disruptive – but this was me being ‘diplomatic’. Today, I’m 100% focused on market demand, not “community” agenda.

  1. What do you like about your particular disability?

I’m told that I have CP. It causes me to be very deliberate about most things I do and say. To compete and deliver at the highest levels as an Entrepreneur, a husband, and a dad I have to do things that 80% of the world just won’t consider, let alone act on. That gives me an incredible advantage over most folks. I do things better because my process is deeper and higher quality. I’m a brutal prioritizer – so I do fewer things, at a level of quality that few get to. That is driven by my membership card as PWD.

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

It’s large. It’s normally distributed like everything that is large. In that distribution are the same demands, hopes, and dreams as every person on the planet. If that was well understood by brands and governments – backed by data – PWD are re-valued in 3 years.

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

I’m picking 2 – 1 not AT, one AT:

My Bloomberg API – I can pull any financial data from anywhere in the world to our Excel models. I cannot imagine life without it.

My King Keyboard – Built in 1983, it’s a large keyboard with 1-inch diameter keys. Kinda pathetic that in 2016 I can’t find a better solution. I CANNOT WAIT FOR BRAIN TO COMPUTER INTERFACE – my productivity will explode. By the way, if you have a working King Keyboard lying around, I’ll pay you cash for it. I’m down to 2 working keyboards, and if they break, I’ll be forced to invent a working brain-to-computer interface, and that won’t be pretty.

and…

Where else can we find you online?

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

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

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

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

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Getting to Know You

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

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

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

Now That We’ve Been Introduced…

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

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

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

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

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

About Disability

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

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

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

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

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

 

Getting to Know You

Your name: Loren Steinberg

What’s your connection with disability?

I was born with a disability called Arthrogryposis. It means that my joints don’t bend very much, and I use a power chair to get around.

Star Trek or Star Wars? Star Trek…definitely Star Trek. The Next Generation to be precise, I was indoctrinated at the tender age of 5.

If you could live in any other country for 2 years, where would you go? I would love to live in Ireland for 2 years.

What dish would your bring to our community picnic potluck? I would bring mac n cheese with the super crunchy, baked on topping.

Now That We’ve Been Introduced…

What do you do:

For the moment, I work at the Center for Independent Living as a Systems Change Advocate. I get to network with folks from my community as well as all over the state who are engaged in disability advocacy. This position has offered me an incredible chance to not only develop a more well rounded understanding of the systemic barriers that people with disabilities face, but to also figure out how we can work together to change them. My next adventure is grad school. I was just accepted into a PhD program in Clinical Psychology, so I’ll be leaving CIL in late July to go back to being a full time student.

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

I started working at CIL right out of college. My undergrad degree was in Biopsychology and I was pretty involved in campus disability organizing while I was a student. When I finished school I knew that I wanted to find a job with a focus on the disability community, so I applied for a summer internship with CIL’s Youth Services Program. After the summer ended, the internship opened up to the position that I’m in now and I’ve been at CIL ever since. It feels a bit like I’m coming full circle now: I’m going back to school to study Psychology, but having had the opportunity to work at CIL I’m fairly certain that I want to continue working in the disability community in one capacity or another for a long time to come.

Where would you like to see yourself in 5 years?

Ideally I will be finishing up my grad program within 5 years. After that, I’d like to either use my degree to direct a DSP program or provide mental health services to people who are adjusting to new disabilities. It would also be amazing to live abroad for a year or so, as well.

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

I want to be remembered as someone who died without regrets.

Who or what inspires you?

I’m inspired by people who don’t give a crap about what everyone around them thinks, and who do what they know is right even if they are being told that they can’t or won’t succeed. I’d love to be able to say that the person who embodies this for me is a figure like Gandhi or Amelia Earhart, but the huge nerd in me immediately thinks of Brienne of Tarth from Game of Thrones.

About Disability

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

I would tell myself that there are a lot of idiots in the world, and I will meet a decent number of them. But to remember that when people act like idiots it’s a reflection of their own lack of understanding and not a reflection of something being inherently wrong with me. And I would also say that it is not my responsibility to educate all of the misinformed people out there, at some point they get to take that on themselves.

What do you like about your particular disability?

I like the fact that I’m small. I can save money by buying kids sized clothes, I don’t spend much on groceries, and my friends can carry me up to their inaccessible houses.

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

That disability is probably the least interesting thing about me.

What single piece of technology makes your life easier?

My power wheelchair, I would be seriously stuck without it.

LS
Where else can we find you online? Facebook

 

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