A girl’s anger transformed into a woman’s advocacy

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Rosemary Musachio

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.

Alice Wong

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.

Direct Course Online

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.

National Council on Disability Image from: https://www.facebook.com/NCDgov/

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.

President Obama Appoints Alice Wong to National Council on Disability. Image from: www.ucsf.edu

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.

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