Growing up with spinal muscular atrophy, a genetic neuromuscular disease that affects all muscles of the body, can bring social challenges for anyone.  For Alice Wong, the challenges made her angry.  Rather than the anger becoming a negative impact on her adult life, she has been able to utilize it to fight for her rights and those of others with disabilities.

As she wrote in her essay Hey, Angry Girl, Alice faced a lot of attitudinal barriers while she was growing up in Indianapolis, Indiana.  Besides the usual stares and naïve questions from people, she also faced barriers in her education.  For instance, to complete her second year drama class, one of the requirements was to do a skit that required physical action.  The professor insisted it had to be done standing up, which Alice couldn’t do.  So she had to forego it.

Attending the University of California, Alice discovered ways to break down barriers that she had encountered during her youth and still was facing.  Works of disability activists and researchers such as Paul Longmore, Irving Zola, Erving Goffman, and others inspired Alice to express her ideas and voice her frustration through writing and research.  Her writings have helped people with disabilities to live as independent as possible.

For instance, Alice is the Staff Research Associate for the Community Policy Living Center at the University of California where she authors curricula for the College of Personal Assistance and Caregiving and producing reports on Olmstead-related legislation and lawsuits.  In fact, Alice is the co-author of several online courses on personal assistance care, which can be found at Direct Course Online.  She’s also the founder of the Facebook group “Self-Directed Care Discussion Group”, where members can voice their concerns and ask questions about personal assistance issues.

Besides personal care assistance, Alice also has motivated other persons with disabilities to make their voices heard.  She has launched the Disability Visibility Project, a blog-like platform so persons with disabilities can write about their challenges and successes.  These stories make our voices heard, act as a historical resource, and illustrate their diversity.  As with the Facebook personal assistance group, she also utilizes Twitter to encourage them to discuss issues that concerns the disability community.  Hopefully, agency or government officials notice these discussions and act upon what needs to be done to ensure our basic rights as humans.

Alice also promotes social media accessibility as a council member of the National Council of Disability (NCD).  In 2014, she co-moderated a series of online dialogues to discuss how social media platforms can become more accessible, such as users adding text alternatives to images and including correct captions for videos.   “{O}ne of my advocacy efforts is through community-building efforts on social media such as Facebook and Twitter,” Alice says. “I’ve come across some amazing people with disabilities all over the world and we share our experiences that seem to be universal.”

As an avid advocate for persons with disabilities, Alice offers three bits of advice.  First, don’t consider yourself the problem.  Society creates most of the barriers that you need to overcome.  Second, reach out to other persons with disabilities who have experienced similar situations that you do for guidance and mentoring.  Third, share your struggles and successes with others who may need help.

Alice turned her anger as a little girl into something positive as a woman—her passion and desire to help others with disabilities.

Follow Alice on Twitter at @SFdirewolf.

Speaking with my sister about disability seems like a natural conversation. The only thing is that my sister Sara does not see disability the same way as me. Sara has a harder time putting her finger on exactly what the term even means. Her reaction made me think of why it seemed to be such a clear cut thing in my mind. I began to question if it even was as simple as I had been making it. Sara had opened my eyes to the possibility that disability is like a shapeshifting animal that is difficult to define. Sara brought up our friend Dave. He has recently been diagnosed with Schizophrenia. Sara brought this up because he has been a friend of ours and after struggling for a while has finally found out a diagnosis so he can begin to cope with what is going on.

Sara processes things slowly and takes her time to consider all of the aspects of change. Having known Dave since we were both children, this is a change in Sara’s mind, Of course for him as well. Sara was born with Down syndrome, she is very high functioning compared to some others with Down’s. Thinking of someone gaining a disability is a strange concept for us all, but Sara has had to deal with the topic of disability her entire life. Sara hears many of her loved ones talking about disability on an almost daily basis.

Our mother, Debra Ruh, and I both work in the disability advocacy realm and it is a constant topic of discussion for both work and personal life. Recently GLOBI has began to ask for submissions to their global #DrawDisability campaign. When we told Sara about the initiative she was excited and wanted to contribute artwork for them. They are asking people all around the world of all ages to draw what disability means to them. Sara’s first choice to draw on the topic was the idea to create a portrait of Dave. What does disability mean to any of us?

To learn more about Globi and guidelines for #DrawDisability, please visit
www.globi-observatory.org/drawdisability

To learn more about Ruh Global Communications, please visit
www.RuhGlobal.com

Community Catalyst Award

Organization: TecAccess LLC 

Name: Debra  Ruh
Title: CEO & Founder

1.  What do you feel has been your most notable contribution to catalyzing positive tech-related community action or access in RVA in recent years?

TecAccess’s continuum of effort to make technology and technology-enabled access available to everyone in our society, particularly wounded warriors and the aging, is our contribution, and our business mode.

TecAcces got some significant national attention in 2009, including being named a Trailblazer in Dell’s “Take Your Own Path” campaign, helping shine light on Virginia as a center for innovation in technology access. Bringing positive national media attention to Virginia is our latest accomplishment, driven by our continuing work to make technology available to everyone. One example of that work is Virginia’s DVETS program, started several years ago and now a nationally-recognized platform.

Ultimately, it comes down to this: disabled citizens in Virginia, and across the globe, want to participate, be taxpayers, have a voice. We help them achieve that.

2.  Describe the impact of that contribution on the RVA community.

We’ve put the region on the map as a successful example of the power of employing and engaging the disabled community. Best practices for the entire country are being developed and demonstrated by a Richmond company.

In the last three years, Virginia has gone from near the bottom in services to the disabled to a solid middle-of-the-pack, which is really aggressive progress. TecAccess has helped make that happen. We won a grant for Virginia’s Office of the Sr. Advisor on Disability Policy (Kaine administration) for career development for the disabled, which came about because of our efforts to establish best practices. Another achievement was getting Virginia recognized by the National Technical Assistance & Research Center at Rutgers University.

Our biggest impact is the public/private partnerships we help create, where we work to develop  best practices for global technology-access efforts.

3.  What motivated you to create or get involved in this program?

We wanted to demonstrate how a small for-profit company can make a big impact in an important global effort, particularly in hiring the disabled. That was our spark. We turned on a flashlight, and now it’s become a floodlight.

4.   What risks have you seen with your involvement?

The risk is that we won’t achieve our mission. We’ve had to tighten our belts in the recent downturn, along with everyone else. Reinvention, opening new markets, re-tooling our processes, all of it became part of our daily work. We’re a risk-management IT company, with a new focus on how to both manage risk AND get recognized for being a market leader.

5.  What are the future plans for this program?

We are looking to build TecAccess into a scalable business model that can be adopted by companies globally. Helping our disabled fellow citizens fully participate in the economic growth of our local, national, and worldwide economy is our goal.

6.  Explain why you believe you should win this award.

The work that we do is incredibly powerful. Social entrepreneurship is our model, with both social good and the profit motive having equal weight. We’re doing things here in central VA that have global impact, demonstrating the positive impact of fully including everyone in economic growth, and the growth of human potential. We’re changing the world from right here in central Virginia.

7.  50-words-or-less

TecAccess makes technology accessible for all as a global leader in access for the disabled, including wounded warriors and the aging. Working to build public/private partnership to further its technology-access-for-all mission, TecAccess has been recognized internationally in the media, and by industry leaders like Microsoft and Dell.