Q&A: Local advocate discusses the role of hope

LOOK AROUND: When it comes to advocacy work, Jade McWilliams encourages residents to look within themselves as well as in their community. “Look at what is not going well for you, what is not going well for the people you care about,” McWilliams says. “Then get creative about what can be done about that.” Photo by Ray Hemachandra

When Jade McWilliams, who uses the pronoun they, was notified by email earlier this year that they’d been awarded the 2020 Empowering Hope Award, they were dumbfounded. After all, they say, “If I won it in 2020 and now it’s 2022, why didn’t I know sooner?”

Like most things, the award, typically announced at the NC TIDE annual conference, was delayed due to COVID-19.

After McWilliams’ confusion cleared, they were pleased by the recognition. NC TIDE’s Empowering Hope Award celebrates people who have overcome adversity through tenacity, strength and self-determination while inspiring hope and empowering others through their own personal life journey.

McWilliams — a Western North Carolina advocate for adults with developmental and intellectual disabilities — relocated to the area from upstate New York in 2001. Later, they received an autism diagnosis by the Asheville TEACCH Center.

Catherine Faherty, an autism professional who recommended McWilliams for the award, says, “From the moment of diagnosis, Jade dove deeply into self-examination, which has resulted in generous self-expression, education and community service.”

Along with McWilliams’ more earnest community work, they also embrace the whimsical. As a child, they wanted to build Muppets with Jim Henson, and now they love residing in WNC because of its embrace of creative living. “I’ve met a chiropractor that works on goats,” McWilliams exclaims. “People can do almost anything here and have it taken seriously. I love that.”

Xpress recently sat down with McWilliams to talk about their journey to becoming a community leader, the Empowering Hope award and how individuals can make a difference within their own community.

This interview has been condensed and lightly edited.

What is the most significant part about being recognized with this award?

The way my life has unfolded, I have never been able to complete a college degree. So, being recognized in any formal way for the work I do is very validating, and that feels good. It’s important that people are looking at our community of folks with all kinds of disabilities and formally honoring the work done by nonprofessionals who don’t have letters after their name.

Does receiving this award change the way that you look at your work?

It’s definitely something that I can put in a bio. I do a lot of work with helper organizations on how to best serve the needs of people with different kinds of disabilities in the areas of sexual abuse. Being able to say I have this award legitimizes me in a way that shouldn’t maybe be necessary, but it definitely helps. I have encountered situations where people wanted me to present or share with a group, and when they found out that I didn’t have an advanced degree or that I couldn’t offer continuing education units, they said, “Oh. Thanks, but no thanks.” That’s really hard, and it makes me very angry. So, I appreciate the award for validating people on the outside.

How do you avoid burnout?

Honestly, it’s not easy. In 2021, I was hospitalized for a suicide attempt and spent a year not doing any work. I have a strong community of folks where we help each other out, and that is wonderful. I also have people who check in with me and say, “I think you’re doing too much.” And I say, “Well, let’s look at this and see.” But yeah, it’s easy to get burnt out. It’s easy to be despairing. And it’s easy to get caught up in terrible things that happen in your community.

What advice would you pass along to someone who wanted to make a difference in their community?

The first thing I would tell them is to look not at the big issues but within your own community. Look at what is not going well for you, what is not going well for the people you care about. Then get creative about what can be done about that. Sometimes getting creative means you need to talk with other people about it or talk to people who work in other disciplines. Those conversations are really worth having. I also believe that it’s fundamentally important that we lift from the bottom up, a very grassroots approach to advocacy and activism.

What propelled you to take on this role as a community leader?

A large part of it has been my life. I am definitely a product of multigenerational poverty. I grew up with my family on welfare. Today, I live on SSI [disability], which is $841 a month.

My mother had profound and serious mental illness and substance use problems. That made growing up very difficult. I know about psychiatric hospitals and mentally ill people being arrested and homeless and the impact of addiction when there’s no money.

When I was 15, I met this guy who was twice my age. He really groomed me, and I went to live with him when I was 16. And that was a whole new, wonderful 18 years of hell. Due to my upbringing and disabilities and challenges, I had a real inability to understand how screwed up so many things in my life were.

I finally started getting professional help at the Asheville TEACCH Center. When I started getting services there, I got less isolated and got some perspective. Eventually, someone I knew through that program said, “If you had a place to go, would you leave?” And I said, “Yes.” And she said, “You can come stay at my house for as long as you need.”

So I did that, and I never went back. Being able to compare my life now to my life then — how vast that difference is, how wonderful and thankful and grateful I am today. It really made me want to be an advocate for other adults with developmental and intellectual disabilities. Those are some of the most vulnerable and abused people in the world. I just want to work toward a more inclusive world where people don’t have those experiences and where we’re all appreciated for who we are and how we are and we have opportunities to develop our potential in ways that are meaningful to us.

It’s important as a society that we work to find ways to value every person. Part of that has to start with reinforcing the social safety net. Welfare reform killed people including my mom, who died due to a lack of health care and being too disabled to pursue getting disability benefits that could have saved her life.

In addition to her mental illness and substance use problems, she was also a Type 1 diabetic. It’s hard to get insulin when you don’t have any health insurance on an ongoing basis, and if you’re transient or don’t have secure housing. … There are a lot of things that work against people like that, who are incredibly vulnerable. I just feel like there needs to be a better system for catching those people. I advocate and hope for a world with better ways of preventing those needless deaths and suffering of people.

What do you see as your biggest success to this point?

My biggest success is not being dead. I am 41, and I never expected to live this long. I’m very impressed with myself for the things I’ve lived through and have done so without ever developing a substance use problem. I never became an unkind person. Being alive and having my life be good is my greatest accomplishment.


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