Insights from Experiencing Temporary Disability
SELF-ADVOCACY: know yourself, know what you need, and know how to get it
Advocating for disability rights often requires those outside the disability community empathize and understand through listening. But sometimes the most impactful understanding comes from experience.
Tiffini Mueller, Relay Resources VP of Marketing and Communications, travels to Washington, D.C. with a Relay employee every summer to attend the SourceAmerica Grassroots Advocacy Conference. The event highlights the impact of public policy on employment for people with disabilities. This year, her traveling companion was me: Mike Best, Relay Resources Janitorial Trainer. It was a great opportunity to share my story and build friendships, while learning about disability advocacy and ways to empower our employees to be self-advocates.
Then about a week after the conference, Tiffini ruptured her Achilles tendon during, of all things, a game with her kickball team. The injury requires twelve weeks of initial recovery using various mobility devices and takes nine to twelve months before resuming full normal activities. Knowing that this accident would have an impact on her life in many ways, I was curious to learn how this experience, and her temporary disability, impacted her.
MIKE: What was it like to suddenly be differently-abled?
TIFFINI: It took a while for it to sink in. At first, I was kind of in denial. I couldn’t walk. I was in a cast. I had to use crutches and I’d never used them before in my life. The first couple of days I really remember thinking about some of the conversations we had on our SourceAmerica trip. Specifically about how you've had to figure out workarounds your whole life, like getting on the floor to tie your shoes.
I couldn't reach deep into my refrigerator. If I wanted to put my almond milk in my coffee, I had to have it in the door. Then to transport that cup of coffee from the kitchen to the dining room, I had to remember to use a sealed travel mug and bring some sort of backpack, because I needed both hands on the crutches. It’s just one a small example of many things that forced me to slow down and take the time to figure it out.
MIKE: At some point did you feel the need to ask for help?
TIFFINI: That was tough. I’m pretty stubborn and independent. My husband and I live a fairly simple life – we don't have kids or a lot of other demands on our time besides work and friends and family. I was lucky I had him to help me, but it wasn't easy to accept his help even though he wanted to offer it.
For example, we have a few stairs on our front porch and I didn't know how to use crutches to maneuver them. So I had to physically hang on to him and hobble down the stairs to get in and out of the house. When he left, I was trapped. That didn't feel good.
He told me this was the first time he felt I really needed him. We have a great relationship, but I’m very independent. So, during this time he felt really valued. I've been reflecting on that quite a bit. When we (as stubborn independent people) don't ask for help, we're not only preventing our loved ones from helping us, but we're keeping them from a deeper level of vulnerable connection with us.
MIKE: This really resonated with me. As a person who has been disabled since birth, it’s still incredibly difficult to be vulnerable enough to admit that you need help. It might be something really simple; like asking someone to help you dish up your plate at a potluck, or get help carrying something that is too big or oddly shaped.
One thing I am certain of is that if someone asks you for your help in one of these situations, they have placed a lot of trust in you. It is also important to remember that you are allowed, and even encouraged, to offer help, but if your offer is declined you should respect that decision and move on. Anything short of that could be considered a display of sympathy, which can feel demoralizing and humiliating.
Being a member of the disabled community can be tough, even if it’s just temporary. One of the hardest things to navigate is going out in public. Whether you are just going to hang out with friends, or you are traveling for work, there always seems to be a social challenge or two to overcome. Tiffini had recently gone on a work trip so I was curious to know how it went.
MIKE: You traveled through the airport on a work trip, what was that like?
TIFFINI: That was really eye opening on a couple different levels. I used wheelchair assistance. It was like being a passenger in a car and feeling like you're constantly about to run into somebody. I became kind of invisible because no one was looking at me. No one looked me in the eye. They would look at the driver of the wheelchair and talk about me like I wasn't there. ‘Oh, is she going to Gate 3?’ Instead of, ‘Are you going to Gate 3?’ There were a lot of things like that.
Being someone who makes a lot of eye contact with people in general, it felt so foreign that nobody would make eye contact back with me. I wasn't able to engage with anyone; even just as a smile.
MIKE: Having this conversation with Tiffini made me think of how some people view others with disabilities. Ableism is a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be fixed in one form or another. Not everybody Tiffini interacted with treated her that way and not everybody I interact with treats me that way either. To those of you who are kind and respectful, I want to say THANK YOU! However, if you find yourself falling into the category of ableism, take a moment to step back and think about how your behavior can impact someone.
MIKE: How has this experience affected your self-esteem?
TIFFINI: When I was at the conference, I would have the opportunity to meet new people, but in the moment, all I could think of were things like what my hair was doing. I’d realize I didn’t have any jewelry on because I had been too focused on making sure I had my crutches before I left my room. I was distracted and didn’t quite feel like I had the time or energy to get dressed up, especially when it was difficult at best to shower, stand at the mirror, and put clothes on. I started to give up on how I normally got ready for the day. These are small examples, but it adds up and weighs on you after a while when you don’t feel your full self. I also noticed that I had less confidence to raise my hand and ask a question in the audience, or to do the things I would normally feel really bold and brave to do. I kind of held back.
At this conference there was some free time and a big group of people went to the pool where there was a lazy river. Obviously, I couldn't do that. It was difficult to even get to the edge of the water to say hi. I think I just chose to be alone because I didn't feel like myself. I didn't feel like part of the group.
MIKE: Those two experiences feel very similar to how I feel when I meet new people or am thrust into a situation where I’m the only one who is ‘different.’ What helps the most in these moments is to be included, respected, and treated the same as everybody else. Here at Relay, we value equality and a strong sense of community and belonging. That has had a profound impact on my self-esteem as well as my willingness to contribute to our mission.
Mike: What’s something you’ve learned about yourself through this experience?
TIFFINI: I think the universe was trying to tell me to slow down and that each minute of the day doesn’t have to be filled with doing something. I also learned how to simplify my life a bit. Some of the things I thought were important, just aren't. I am still learning what it means to let your body heal, both physically and mentally.
I'm also grateful for learning how to support my friends better. I had one friend early on who, no matter how much I said I didn't need it, showed up with food. She was there to help me. It’s made me want to really think about how I want to behave when I have people I care about who are in similar situations. How to show up. How to lean in. How to check in. Every little text and everything everybody did. That stuff means so much. I think in the past I’ve let myself get busy and say I was going to get someone a card then forgot and figured they didn't care anyway. They do care. I know I did.
And it’s really made me have a whole new appreciation for working at Relay. Our vision is to provide meaningful work. We employ people with diverse disabilities - some temporary, some permanent. We're all likely to struggle with our abilities at some point in our lives; through injuries, aging, mental health issues, etc. We can all make the world a little easier on each other if we make some basic commitments. Ask. Listen. Respect. Look people in the eye. And show up.