By Norah Wolff
INAS: I recognize that you were diagnosed with multiple sclerosis (MS) in 2015 and that influenced your choice to be a spokesperson for Tennessee Disability Coalition. After your diagnosis, what was your thought process like? How did you come to the ultimate decision to give back to the disabled community by immersing yourself in the advocacy world?
TOM: When I was first diagnosed with MS in 2015, I was terrified. Terrified of what could happen to my body, but more terrified about what would happen to my job, who I could tell, and who I could trust. My then employer ‘strongly encouraged’ me keep it under wraps. I found that unacceptable, as MS was something I had no control of, and I felt control was slipping away by the second. I jumped head-first into MS advocacy for a sense of regaining control – particularly at a time when it didn’t feel like I had much. I loved that work so much, I opted to work in advocacy full time.
INAS: Tom, I recall you mentioning that this job is extremely challenging at times, but the reward makes it worth it. What challenges are the most substantial to you? What do you find to be most rewarding in your job?
TOM: As director of communications & technology for the Tennessee Disability Coalition, my role is tremendously dynamic. Huge highs, and lower lows. The largest challenges are simply getting folks to see people with disabilities as people. Not caricatures. Not villains. Nor some source of inspiration. We’re just people trying to live our daily lives in a world largely designed without us in mind, which can be harder than it sounds. As humans, as our reference points of disability are usually short-sighted, or flat-out wrong. We tend to think we’re a small subset of people. In reality, about 1 in 4 Americans experience some form of disability. Diabetes, Down syndrome, depression, cancer – disability is a vast group of people. Intersecting with all groups, religions, races – you name it. The single most rewarding part of my job? When people with disabilities feel seen. Helping a meek, nervous mom from rural TN not just stand up for her own needs, but to find her voice to stand up for the needs of other families –that’s everything for me.
INAS: An interview discussed the efforts that you and a woman exerted in order to eliminate ableism language on public documents. Watching that, it was amazing to see what you did to help in just one case scenario. Can you speak a bit about the steps you take to be an advocate? It can be difficult enough to speak up for yourself, so how do you approach speaking on behalf of others?
TOM: When speaking up on behalf of others, the single most important thing to do is listen. Former TN Senator Howard Baker used the term ‘eloquent listening’, explaining, ‘There is a difference between hearing and understanding what people say. You don’t have to agree, but you have to hear what they’ve got to say.’ Listen to their unique story – their values, and the narrative they form of themselves. Pay close to attention to their individual challenges and needs. Everyone’s needs are different, disabilities or otherwise. Then highlight the issue, a possible solution, and shout it from the rooftops.
INAS: What steps can we take for this community? The ADA only does so much, yet on the day to day, there is an undeniable need for more accessibility and equality in our workplace and in every aspect of our lives.
TOM: While the ADA is a landmark piece of legislation and inspired subsequent disabilities rights legislation across the world; the ADA is not a cure-all. In reality, it’s the bare minimum in terms of accessibility.
First, ensure your website is accessible to people with disabilities. A website is your organization’s foremost brand portal, and sets the tone for everything. There are several free website accessibility checkers, and your own IT department can help raise your website’s accessibility. There are also many consultants that provide accessibility insights, and many are quite good. That said, the most important and effective consultant you’ll ever have is people with disabilities navigating your site and providing feedback.
INAS: What would you like to see event planners and speakers implement in the industry to create inclusive events?
TOM: Couple things here. On the digital front, when setting up a registration form, simply add a field that asks, ‘What accommodations can we provide?’ Individuals with disabilities know exactly what they need, and we’ll recognize this is an inclusive event and organization in which the needs of people are anticipated and acknowledged. On the physical accessibility front, ensure the space has accessible restrooms and an accessible path of travel. A path of travel includes sidewalks, curb ramps, and other interior or exterior pedestrian ramps; clear floor paths, etc. Meaning, can a person travel through your event without physical barriers? The number of barriers we don’t usually notice would astound you.
INAS: Actions vs. words seem like a prevalent topic as you speak on behalf of the disabled community. Many people say that they support these efforts, but do nothing to prove this nor assist to implement them. How can citizens in your everyday life make subtle differences to make an inclusive community?
TOM: I get asked this question a lot, and I’m not sure everyone likes the answer but it doesn’t make it any less real: you need to start with your own mask before helping others. Take inventory and ownership of your own perspectives and feelings of the disability community, and see how accurate they are. Do you feel a sense of inspiration? Pity? Fear? Indifference? Some combination thereof? Does your mind gather memories of a diverse community at every intersection? Or a monolith? Do you understand that diagnoses like autism, cancer, and heart conditions are considered disabilities? When we can better tune our reference points, a clearer path of support tends to reveal itself.
INAS: In the news, there is much talk about Tennesseans with disabilities arguing to qualify for TennCare. TennCare covers long-term services and community-based supports which includes a personal care assistant, in-home physical therapy or nursing for people with disabilities — but a person can’t have more than $2,000 in assets in order to qualify, which creates an extremely hard decision for working Tennesseans. The Tennessee Disability Coalition has stated that this bill will be difficult to pass. From an individual directly impacted within the state, how has the approach to this issue been handled? What do you think will be helpful for citizens to do in favor of this change?
TOM: Tennessee is a self-proclaimed ‘Employment First’ state, in that, all avenues to employment must be exhausted before the state will offer assistance. But, those kinds of income caps are antithetical to meaningful employment for disabled Tennesseans. The kind of personal caregiving services are never covered in perpetuity by a private insurer. Only Medicaid, or TennCare here in TN, will. The kind of personal support that is critical to be able to sustain a job. In our “Pathway to TennCare for Working Adults with Disabilities Act” Tennesseans with disabilities will pay premiums to essentially carry TennCare as a secondary insurance. In other words, whatever their employer-sponsored plan won’t cover, TennCare will; giving folks that want to work the opportunity to do so, without sacrificing their care. Through our strategic messaging, meetings with leadership, and media outreach, we put forth two strong narratives. 1. Highlighting the inherent unfairness and hypocrisy of a “employment first” narrative, and 2. The fact that all but five states already have similar programs on the books that do the same thing. I am proud to report in April, the bill passed unanimously in both chambers of the Tennessee General Assembly.
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Photo source: Tom Jedlowski
