HUBweek Change Maker: Heather Watkins

Disability Advocate, Author, and Blogger

Heather Watkins is a Disability advocate, author, blogger, mother, and graduate of Emerson College with a B.S. in Mass Communications. Born with Muscular Dystrophy, she serves on a handful of disability-related boards and is the former Chair of Boston Disability Commission Advisory Board. She is also a Co-founder of the Divas with Disabilities Project, a supportive sisterhood network representing women of color with disabilities. Heather is also a member of Harriet Tubman Collective, composed of Black Deaf & Black Disabled activists and organizers. Her publishing experience includes articles in MDA’s Quest magazine andMass Rehab Commission’s Consumer Voice newsletter, and she has blogged for sites including Our Ability, Art of Living Guide, Disabled Parenting, Grubstreet, Rooted In Rights, Women’s Media Center, and Thank God I. Heather’s 2013 short story “Thank God I have Muscular Dystrophy” was published as part of compilation in the Thank God I…Am an Empowered Woman® book series. Her blog Slow Walkers See More includes reflections and insight from her life with a disability.

Zoe Dobuler: Can you tell us a bit about your background, and your journey to becoming an activist?

Heather Watkins: Sure. I was born with a form of Muscular Dystrophy in Boston, raised, educated and still live here. I am also a mother of a young adult daughter, writer, blogger and serve on a handful of disability-related boards and projects and a former advisory board Chair of Boston Commission for Persons with Disabilities. I didn’t always use mobility aids until about 13 years ago in my 30’s and when disability started to progress, affecting my mobility more and respiratory muscles as well. This prompted a change in my work status and caused some deep introspection, and panic about my life’s trajectory since I also had a young child at the time knowing what affected her mother would also impact her as well. Questions about how I would move forward circulated heavily in my mind. I started getting some delicious answers largely born out of frustration that became fuel for work toward disability advocacy.

Over the years, lack of structural access was always something I was concerned about but brushed off as I was trying to “go along to get along” so to speak. It wasn’t until this turning point in health that motivated me and allowed more time to focus and put effort in this goal. I remember noticing stairs to some local business, being annoyed, wondering why these impediments exist and why more wasn’t being done about it and had an lightbulb moment. “Why don’t you do something about it?” was what resonated back and shortly after that I got in touch with a local disability rights advocate after seeing them featured on news broadcast about same lack of access concerns where we both lived! This felt like the nudge I needed. After meeting they intro’d me to a local disability org advocating for disabled persons civil rights and the ball kept rolling since being connected with sister orgs and diverse advocacy circles. It’s been quite the journey!

ZD: On your blog, you mention your involvement with a “community project to increase accessibility to local businesses for people with disabilities” — can you tell us more about this? What other projects are you currently working on?

HW: As I mentioned before, the local advocate I met was working on trying to increase access to area businesses for people with disabilities as well as parents with strollers. We met around 2007 and decided to strategize and partner up a bit. Our hope was to raise awareness and increase structural access as universal access helps us all as well as boost community morale. Really difficult or damn near impossible to “shop local” if you can’t gain entry. Also since many disabled folks often shop with non-disabled fam and friends it becomes a loss for all if access is impeded. Potential consumers may have no choice but to take their business elsewhere, maybe even outside of local community.

I’d love to tell you this project took off wildly, but over the years it only gained a little bit of traction. To date, there were a couple articles written, a meeting with local board of trade, and even a pilot program that would’ve included surveying businesses but there was turnover with coordinating partners and departments, and priorities got shifted so it’s sort of stalled over the last few years. I don’t see that as a fail though since I gained so much insight and played a big part of where I am today in terms of growth as an advocate. Plus I still talk about it and post on social media from time to time and did so just recently on #SmallBusinessSaturday so that accounts for something I think even if it only raises awareness and sparks thought.

Another project I’ve been involved in is the Fashion Accessibility Project over the last 2 years which focuses on fashion access for disabled peeps. It convenes designers, an array of disabled persons, artists and theatre folks, and allies together to create customized clothing for the grand runway. And man did we sashay down that runway in style! Disabled persons were centered and weighing at all all phases of production. Fashion access is no small feat and is actually politically-charged since it involves freedom of expression. Not so easily poo-pooed away as frivolous when you consider that being your authentic self, having that kind of personal autonomy is actually quite weighty. Some other projects I’m involved in are centered on disabled parenting and women and reproductive health/healthcare.

ZD: The ADA had its 28th anniversary this summer, and you’ve written a lot about the law on your blog: how it has been a source of empowerment, but also how still, almost 30 years later, some of its promise remains unfulfilled. What still needs to change to create a fully accessible society, both culturally and in terms of the physical environment?

HW: I definitely think we as a society need to work on universal access as I mentioned in terms of structural access, systemic access, and the intersections of disability, race, gender identity, culture, socio-economic status, etc., and how these marginalizations often receive disparities of care and unwelcoming attitudes. We really need to be listening to disabled and deaf folks especially from communities of color and may be multiply-marginalized.who share their experiences. Too often accounts of pain and trauma are either dismissed, downplayed, not amplified in meaningful ways. This can affect quality of life areas and decisions re healthcare, housing, education, employment, etc Supporting disability rights is supporting human rights since disabilities/being disabled permeates all aspects of lived experience. We also need to widen the lens beyond this prism of limitations only noted far too often across media landscape. We live comprehensive lives yet those depictions and narratives rarely make the radar. This can impact individual and societal consciousness and how we value disabled lives and can be devastating since uniformed beliefs/opinions can make their way into backward policies and budget cuts that can gut-punch quality of life.

As a Black disabled woman, I often express being in need of care, a caregiver, and a community-builder and I know many women who exist in that continuum especially from communities of color. I value interdependence knowing how we all help one another and when I’m supported it helps support my family and helps me continue the work I enjoy doing. So it has a ripple effect and has the potential of far-reaching impact. Makes me think of that pebble thrown out to the pond that skips and makes circles.

ZD: How can the HUBweek community (blog readers, attendees etc.) be the most effective advocates for and partners in championing the rights of people with disabilities? If someone would like to get involved with disability activism in Boston, where should they start?

HW: Be mindful that we are not a static demographic, 57 million in U.S. per the 2010 U.S. Census and nearly 1 billion globally identify as having some form of disability. There is a large range and nuance in those numbers because disabilities are apparent, non-apparent or “hidden” and chronic illness. Disabilities can be acquired through birth, accident, illness, or be age-related. Whether one requires daily help or the assistance is doled out sporadically doesn’t negate their humanity. This should go without saying but sadly society needs reminders, and I think because so much value is often placed on productivity, physical productivity. So the metrics of “success” don’t often apply in the same way as our non-disabled counterparts.

Some of the ways to lend support could be to signal-boost and help amplify stories and work of disabled persons/people with disabilities especially BIPOC (Black, Indigenous, People of Color) whose experiences often get overlooked or ignored. If you have the means, financial help is another way to support work of disability rights activists. Other ways are vote against policy measures/efforts that negatively impact disabled persons and quality of life. These are not disjointed concerns they have connective tissue in community and just because a policy doesn’t directly affect you doesn’t mean you won’t feel it’s impact.

Also, if folks are looking to get involved locally in disability activism there are orgs like Boston Center For Independent Living, Disability Policy Consortium, Boston Mayor’s Commission for Persons with Disabilities to name a few they could check out for great information, calls to action and disability-related events they hold throughout the year. I got my start and intro to fab advocate peeps through BCIL, the first referenced here and then onto Commission’s advisory board where I served from 2009- 2016 and last 2 years of service as chairperson. Currently, I serve as Vice Chair on DPC’s board of directors. These orgs all work to increase and impact quality of life for disabled persons and always welcome support. So I’d say those are great places to start if you’re looking for in-person groups/orgs.

When I started in ’09 with board service, I was still so green to advocacy but have grown so much in terms of self-awareness and sharpened advocacy skills. Working in collaborative effort with like-minded others for beneficial change has been transformative, especially learning from diverse advocacy circles which absolutely felt validating and helped lift the cap off my own potential.

ZD: The theme of HUBweek’s 2018 festival was “We the Future.” How do you interpret that, and what does it mean to you?

HW: Oh, since I was a speaker at “Inter(X)” during HUBweek and the theme was “Making the Invisible Visible,” I’d say I’d say that fits in quite nicely since we’re widening the lens of who that We are. Disabled persons like myself are a part of that vision within the future, are certainly in the present and were in the past. Thinking about cultural icons who had disabilities and that part of their narratives either were downplayed or not detailed. Folks like Harriet Tubman, Fannie Lou Hamer, Brad Lomax to name some whom I didn’t learn had disabilities until well into my adulthood and wonder how that might have affected my budding self-awareness in adolescence. I imagine it might’ve been powerfully validating in being symbolic and substantive since they were examples of disabled persons engaged in meaningful work and modeling possibilities.

For me, “We the Future” incorporates all of that anchoring and foundation paving the way as I, a Black disabled woman sit at the convergence of 3 movements– Civil Rights, Women’s Rights, Disability Rights and pay homage to all my forebears in the struggle. Many sat-in, stood up, or even crawled like disabled activists did up the Capitol Building steps in March 1990. That knowledge supports and undergirds my work as I move into a future that hopefully becomes universally accessible, across the board and contributes to higher quality of life and peace of mind.

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