Impact Feature Issue on Supporting Wellness for Adults with Intellectual and Developmental Disabilities

What Wellness Means to Me:
Reflections from Three Self-Advocates


Tia Nelis lives in Chicago, where she works as a Self-Advocacy Specialist with the Institute on Disability and Human Development, University of Illinois at Chicago.

Liz Weintraub works as an Advocacy Specialist for the Association of University Centers on Disability in Silver Spring, Maryland.

For each person, the meaning of wellness and how they work it out in their own lives is unique. In this article, three leaders in the self-advocacy movement talk about how wellness is part of their daily lives.

Tia Nelis (right) and Beth Terrill were among the 8,000-plus participants in the 32nd Annual Dan Gibbons Turkey Trot, a 5K walk/run held on Thanksgiving 2015 to raise money to feed area families in need.

Tia Nelis: Walking for Wellness

What does wellness mean to you?

Learning about how to be healthy instead of being told to be healthy. It includes experiencing different kinds of healthy food, but not being forced to do it. You have to want to do it instead of being forced to do it. Sometime places where people with disabilities live are forcing diets and forcing exercise, and that won’t work. Teach people about different foods and let them taste different things, and let them come to the conclusion of what they want to do. Sometimes if one person has a health issue then that is forced on everyone. That’s not right. It means having other people supporting you to be healthy and active. 

How did you get started walking as part of being healthy?

I started with my friend and co-worker, Renae. She asked if I wanted to walk with her. She also helped me try different foods and let me ask her questions on what I was eating. She is the first person who helped me a lot when I first started. And she was the best support; she was there for me, and still is even though she does not work with me anymore. I counted on her; she didn’t make me feel bad and she cheered me on. She told me how proud she was of me when I shared with her my progress. She asked if I wanted to try different foods that she was eating. Sometimes I liked it and sometimes I did not. I tried to find the things that were healthy and that I liked.

How much do you walk?

I walk halfway to work and it is about 3.5 miles each day. Sometimes I walk more. By the time I get home it is usually 3 to 4 miles. If I cannot walk outside I can go to the Y and use the treadmill, but I really like being outside. I have a certain route that I know.

Another coworker walks all the way to work. I tried that and it was too much. So I figured out if I walked from the train station to a certain landmark my Apple Watch tells me how much I have done. Then I take the train the rest of the way to work. Depending on the weather, I either get some or parts of my walk in. I’d rather be outside than inside and I prefer walking with a partner, but that is not always possible so I made up my mind that I have to do it alone.

Do you have a wellness goal?

I had a goal on how much weight I wanted to lose so I would set this with my co-worker and I’d try to do it. I have lost 52 pounds.

How does the Apple Watch help you?

On the Apple Watch it has exercise rings that are different colors (standing and movement) and I try to fill up all three circles each day. If I walk halfway to work the 30 minute one is full. I can tell how much I have done and I get a weekly progress report. I get information on how much I have burned, and that kind of stuff is helpful. It is hard to tell without it, and the visual helps me to see it.

What are the benefits you have seen besides just losing weight?

My breathing has improved. I can walk further than I used to be able to do. I am trying new things and I found out I like new things, new experiences, new foods. I have also influenced others at work to go walking with me. I have gone down six pants sizes since I started walking!

Do you have tips and suggestions for others who want to be healthier?

If you could figure out a way to mix up a variety of healthy foods then you won’t get bored eating healthy. It is important that you don’t have to eat the same thing every day. My nutritionist helps with that. I take pictures with my iPhone of what I am eating and then show it to the nutritionist and she tells me if anything needs to change, like I need more protein or that is a good portion or that’s a little too much. Having a simple picture is helpful in letting me see what I am eating. It was easy to help me remember to add green to my plate. I also learned about variety in what I drink and I don’t drink soda any more but I pick from things like unsweet tea with Stevia, water with Stevia, and other stuff. Keep it simple.

For Liz Weintraub, practicing Yoga gives her “me time,” which is important for her wellness.

Liz Weintraub: Living Happy

What does wellness mean to you?

How I am healthy and how my mind is. How happy I am as a person.

How does your employer support your wellness?

I am a much happier person now that I am working for AUCD [Association of University Centers on Disability]. Doing the kinds of things that I really want to do helps me and my wellness. For example, when I do my weekly program, Tuesdays with Liz [a YouTube interview series from AUCD hosted by Liz], I feel it in my body how happy I am. When I am out of a “box,” not seen as only a self- advocate, I can do more and am challenged beyond advocacy. I can do MUCH more and when people allow me to do that, I am happy. I work with lots of active people. Sometimes at work we will take a walk together. One time we participated in a challenge about walking steps. We usually have a fun day every spring to do something as a group that is active. We also get together for lunch and sometimes the topic of healthy foods will come up or other stuff that helps wellness. Like this week we talked about our pets and their importance in our lives – about how they make us happy.

Wellness is a part of your mind, and if you are happy it helps your wellness. I feel like I am happy at work. Getting more hours at work makes me happy.

I remember when I was in New Jersey and lived in a private institution. I was in a horrible workshop and I was not happy there. When I was unhappy I had lots of health problems, even seizures. It was all in my mind and when I got out and got new opportunities and became happy, my seizures are all gone.

How do others support your wellness?

Being involved in advocacy was not enough. Being known nationally was not enough. At family events I would cry a lot even though the events were not sad. Everyone there was married and had their own lives and I was afraid I’d be alone without a husband and my own life. Getting married was a big step in turning this around and it made me happy. Phil and I have our own life and we are there to support one another and make each other happy. So my family and husband really help to make me happy and when I am happy I am well.

I do Yoga on Thursday nights every week (sometimes I miss because of work or other responsibilities). It really helps because it is a “me time.” I do so much for everyone else all of the time and I benefit from having time just for me. Yoga is for me and I stretch my body. Yoga is also something I do just with myself, I am with me, I connect with me. I don’t have to talk.

Another thing that is very important to my wellness is getting sleep. When I do not get enough sleep it is hard. I cannot concentrate. Those days after a bad night’s sleep are hard. So I try to get enough sleep; I go to bed at a reasonable time.

So for me, happiness, a husband, a job I love, sleep, and “me time” are keys to my wellness.