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.
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.
I was born with spinal muscular atrophy, a neuromuscular disease that results in muscles weakening over time—each person’s progression is different.
While I have a strong affinity for Yoda and Boba Fett, I will say Star Trek.
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.
I make a decent sour cream coffee cake and frittata. I’ll bring both!
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.
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.
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.
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.
In addition to family and friends, I’d say nature inspires me.
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.
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.
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.
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.
You can follow Alice on twitter: @SFdirewolf
Originally published in 2013
I have had physical disabilities all of my life, since birth. I have Arthrogryposis.
Star Trek. I like all of the series, but the Original Series is my current favorite. Star Wars is fine, and of course I loved it when the original trilogy first came out, but the whole idea of the Jedi bothers me … a small number of people born with inherited elite abilities who therefore have the moral authority to rule and dispense justice. Kind of like aristocracy, but with some weird Sci-Fi / biological justification. Yes, I’m a nerd and yes, I overthink things.
I am a disability blogger and podcaster. I also tutor community college students in writing.
Right through high school and college, I told everyone that I didn’t want to work in the disability field or join any sort of disability group. I felt that way partly because I didn’t know that anything like Disability Culture or a Disability Rights Movement even existed. It would probably be more accurate to say that I had been told about these things from time to time, but it went in one of my adolescent ears and out the other.
Then, during my senior year in college, I heard about the Deaf President Now movement at Gallaudet University, and soon after learned about consumer-directed, activist oriented Centers for Independent Living. It revolutionized how I viewed disability. After graduate school, I started working at my local CIL. I worked there for 23 years. For the last 13 I was the Executive Director. I left that position because I was exhausted, both physically and mentally, and because I wanted to explore other aspects of disability culture, mainly through blogging and social media.
Teaching English 101 part time at my local community college, plus blogging, and podcasting. Another possibility is overseeing some kind of network of disability blogs and / or podcasts.
I want people to know that I enjoyed my life.
The online disability community inspires me, particularly its advocacy, diversity, and confidence.
You don’t have to look away from your disability and shun other disabled people in order to be a happy and interesting person. There are ways of consciously being a disabled person that are exciting and fun.
This is a difficult question to answer, but to be completely honest, I like that my disability doesn’t affect my intellect. I like that it hasn’t prevented me from being able to explore and understand life deeply and intellectually. I am grateful that for the most part, I have always understood what is happening to me at any given moment, and I have rarely felt profoundly disoriented.
I wish more people would *get* that there are many valid ways to view disability. I’m not just talking about the obvious fact that everyone’s experiences and thoughts are unique. I’m saying that you don’t have to choose between a strictly-defined Medical Model or a strictly defined Social Model. Being strong and clear about these things is important because it helps people make sense of disability, but as descriptions of actual experience, all models are at best only partially effective. Having a positive view of one’s disability doesn’t mean you never wish you weren’t disabled, and working hard fix some aspect of your disability and fit in doesn’t mean you hate your disability or yourself. We can vary our thinking. We can blend ideas. This is as important for disabled people to *get* as it is for non-disabled people.
My ventilator, which helps me breathe at night, and has done for the last 30 years, keeps me alive. Convenience-wise, I would have to say my computer, which is vital to my blogging, tutoring, entertainment, and organizing my life so I can use my limited physical stamina as efficiently as possible.
5. Where else can we find you online?
Now That We’ve Been Introduced…
Big props to VSA Texas and Terry Galloway who got me started in disability arts in 2002 with VSA work and “Actual Lives: Austin”. There, I first learned about disability culture and identity and the horribleness of inspiration porn.
It’s where I came to recognize that I had lived my entire life without examining why the disability community is so marginalized. Also, it was good old-fashioned fun, and as a non-disabled summer intern, I was at the bottom of the heap. That’s not what a lot of non-disabled people expect to hear when I tell them about the project. After that, I did a lot of mixed ability dance with groups in Austin, TX and Portland, OR for several years.
After acquiring TBI disabilities in 2010, I lost my job and turned back to the disability arts scene. This time, I was inside the community and had a ton to protest about the way that being a patient in TBI rehab felt very dehumanizing, demoralizing, and pretty much the opposite of what I’d learned disability culture can be from the Austin and Portland folks. I wrote a short comedy film about life with TBI (“Cooking with Brain Injury”) for Curtis Walker’s “No One Wants to See the Wires” performance project. I thought the film was a joke, but it ended up launching me into writing more short films, starting a web series, directing and producing a feature-length documentary, state and national presenting, and all the other media work I do now. Kind of amazing.
I’m inspired by a lot of social justice and disability justice activists, especially ones working in the arts. I see their work and think yes, yes, yes, I need to add that to what I’m doing. I missed something else. Thank you!
Go talk to someone else going through a similar situation to get some perspective. You don’t have to spend all your time being pissed off about acquiring a disability and self-righteous about how poorly people respond to you now that you’re disabled. This was when my vocal cords got destroyed, and I lost my voice physically and metaphorically. (It never occurred to me to find someone else who struggled to speak, and my speech therapists never suggested it either.) Go get some peer support right now, you! And yes, your rights were just violated under the ADA even though you don’t think you’re “disabled enough” to earn the right to do something about it.
Hey! It’s not about you! If you’re non-disabled or interacting with someone with a different disability (and racial, ethnic, cultural, financial, gendered) experiences than your own, then your discomfort, wishes about how they’d identify, suggestions for fixes, and desire to show off what you think you know about impairments are not needed. Step back. There is no need for you to assume that a disabled person needs your suggestions, rules for living, or corrections to our views about our own lives.
My precious computer. Its name is Monster. It is great beyond description. I miss it when I’m out of town. In fact, I lose a good percentage of my creativity when we’re apart and no other type of computer monitor or keyboard wrenches ideas out of my head like Monster. I love you, Monster!
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Restarting the “Cool Cats: Voices from the Disability Community”, in which people with disabilities are featured. The point of this is to share different slices of different lives. For people to hopefully connect over shared voices, experiences or disabilities.
Please welcome Eliza Riley!
Your name: Eliza Riley
What’s your connection with disability?
I was born with a disability, Cerebral Palsy. Or it might not be – I have never gotten the official word.
Star Trek or Star Wars?
None of the above
If you could live in any other country for 2 years, where would you go?
I would say let’s go to Ireland! I want to see where my ancestors lived, I want to thank them for the Irish humor and the grace of a true woman.
What dish would your bring to our community picnic potluck?
My famous Banana Bread made in a crockpot, oh the cooking lessons we learn in life. Crockpot is your best friend.
What do you do:
I work in development at a local high school. I specialize in alumni activities
How did you come to doing what you do? How has your career trajectory flowed?
With a degree in theater arts I felt ready to take on the world, lol. I took a bit of time to just devote myself the stage, only to realize that I needed more out of life.
So what is a girl to do with a degree in theater arts? I started to work at an employment agency that specialized in working with people with disabilities. It was an interesting job and got me looking into disability advocacy as an employment path.
I then signed on for a year with AmeriCorps. This was very meaningful to me. I spent the year working at the volunteer center of Silicon Valley where I worked with Santa Clara County Collaborating Agencies’ Disaster Relief Effort (CADRE).
One of the primary goals of CADRE was to create a support system to better serve the many vulnerable populations in Santa Clara County and create a system to organize the different types of CBOs who may help with response and recovery in a disaster. I then was able to put on an emergency conference by and for people with disabilities.
It was the first of its kind, where we took conference materials and geared them strictly towards people with disabilities. I then transitioned to work at CONNECT Job Seeker Center. I was able to work with people with disabilities as they looked for work, advising them on what questions to ask, when to disclose and other employment related questions.
During this time I was able to serve on Silicon Valley Independent Living Center’s (SVILC) Board of Directors. This position let me take a closer look at disability advocacy as a movement. I was eventually hired on as a Youth Leadership and Outreach Coordinator. I enjoyed this position as it let me increase my ability to connect with a broader audience.
I was also able to be an ambassador for Abilities Expo, San Jose show. This opportunity allowed me to recruit both audience members and possible exhibitors. I then was able to work for College of Adaptive Arts as an office manager and registrar. This position allowed me to experience the birth of a brand new organization and the celebration that the arts brings to a community.
I now work for my old high school, Saint Lawrence Academy as where I am able to hone my fundraising skills. I would say looking back at it, that I was given many invaluable tools that I will continue to put to use in my everyday activities.
Where would you like to see yourself in 5 years?
That is a very good question. In five years I would like to see myself still living in my own house, still having the drive to get up and work. I want to get back to swimming and eventually walking again. I will spend time exploring the world of art and that piece of me I lost, most importantly still advocating for myself, victims of abuse, and people with disabilities.
Not to be morbid, but what do you want people to remember about you when you’ve gone?
Above all that I had a wicked sense of humor. “Life is shit, you get over it, then you die” Most of my story is here.
Who or what inspires you?
If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?
Get over it, there is so much that you are not going to know, ever.
Science and doctors will be absolutely no help and you just need to consider yourself a medical mystery. Relax about it, it is a problem that you just cannot solve. Go and solve some real issues!
What do you like about your particular disability?
That is a rather tricky question. I like the sense of self it has given me. The sense that you just never know, what have you really got to lose? I like the listening capabilities it has given me. Somehow I am able to talk to people and have no fear of exposing too much or coming off harsh.
Any one thing that you wish people would *get* about disability?
Nothing really, I’m just like everyone else it is just I have been waking up with this exciting notion that using a wheelchair would make life so much easier.
What single piece of technology makes your life easier?
If you would like to share your Voice, please send me an email (email@example.com)
Guest posts are also welcome. Please read this, thank you.