In the summer of 2021, the Minnesota Council on Disability asked local disability advocates to share how COVID-19 affected their lives. One message recurred in their responses: “People with disabilities are not invisible…. We’re not done, we’re not gone, there’s lot of improvements to be made.”
People with disabilities are often not considered in public health discussions. We are often an afterthought, even when we are at greater risk for a disease.
The entire community must focus its attention on those most affected. We are here. We need you to listen to us, to our voices, to our needs. We need people to wear masks and get vaccinated. We need you to take these steps if we are to be part of our communities. It takes everyone to make that happen.
Our ask is simple: Think of people with disabilities first, not last. As the Omicron variant surges in Minnesota and beyond, do your part to protect yourself, your family, and your community. Our lives are worthy!
Booster shots are now available for all Minnesotans 16 and older. Children ages 5 and older can also get the pediatric vaccine.
If you need accommodations, you can choose from a list on the COVID-19 Vaccine Locations page.
Narrator: Logo. Minnesota Council on Disability.
COVID19 Stories: Perspectives from the Disability Community.
Christine: I think the difficulty with COVID for those of us with hearing loss is that lack of communication. It’s so difficult with masks on, and there’s no way you could understand they’re saying. Plus, sometimes they were behind a plexiglass. So, it’s that lack of communication where it made you be very conscious of your disability.
Narrator: Gabriel Rodreick.
Gabriel: I’m a musician and a creator here in Minneapolis. I play shows around the city, around the state. I’ve gone national as well, and I lost a lot of gigs, gig opportunities when COVID hit.
Narrator: Lauren Thompson.
Lauren: Well, it changed because we all had to social distance. But for me and my disability and my PCA needs, I couldn’t social distance. And so, I basically needed to figure out, me and my family, what was the safest way for me to get the care that I needed? And so that meant for a time moving back in with my family.
Narrator: Tricia Borman.
Tactile interpreter interprets for Tricia. Tricia is using an American Sign Language Interpreter.
Tricia: Without – Being without, everything stopped. No socialization. There was no in-person anything. Everything just stopped, just like that.
Even the doctor’s appointments, they changed. We tried to get me to watch a video. I can’t see. I needed to have a tactile interpreter. They wanted me to use VRI, which is Video Remote Interpreting, and I couldn’t do it.
So that’s really been the biggest impact.
Narrator: Lance Hegland.
Lance: One of the most notable things that happened to me during the first official month of the pandemic, one of my support team members thought she had a common cold. Because we were already struggling to find workers to help me, she came into work. I could tell she wasn’t feeling well. The next day she contacted me to let me know that she had tested positive for COVID.
Then the Department of Health said they investigated the matter, and the worker did not test positive for COVID after all. However, the worker said she had tested positive and was still in the hospital.
It was difficult to know who to believe. Did they say that simply to calm my nerves and the nerves of other workers so that our staffing situation wouldn’t get worse?
Narrator: Nell Coonen-Korte.
Nell: I think that we’ve always been a more isolated community, and this has heightened that. And the fact that we’ve not been able to receive services that we normally need.
Narrator: Kim Keprios.
Kim: My beloved brother, Mike, was diagnosed with COVID and a very few short days later he passed away in the hospital.
Mike just –
He made us laugh. He was always happy to be, you know, with me and our family and not every family feels that way. It was just unconditional love.
Narrator: Thabiso Rowan.
Thabiso: One of the biggest things that happened during the pandemic was really being separated from my family, which is difficult because, you know, being that I have a disability I need a lot of help from my family. Especially my parents.
They live close by me, and it was really hard to be able to get the support that I needed because we weren’t able to see each other. And especially at first when we didn’t know what was going on. My parents, they would come and drop things off, or text me, letting me know they’re there, and then they would leave.
So, they would drop off some stuff for me, but I wouldn’t actually see them, and that was really difficult.
Christine: My greatest fear is probably that we’ll end up going back to wearing masks again. Unfortunately, a lot of people are not getting vaccinated, and that’s a concern. And of course, with all the new variants coming out, it’s a very big concern.
And I know for myself, and for the hearing loss community, that is a fear of ours.
Gabriel: I’m afraid that they’ll have to be inside longer and away from their communities and away from their support systems because people aren’t getting vaccinated, because we aren’t wearing masks.
And I think the whole reason that COVID is still here is because we haven’t taken the necessary measures to actually get, you know, subside the effects of COVID. So, I’m scared that we’re not going to respond in the right ways in the future to pandemics and viruses that are inevitably coming our way.
So, I really hope that we can prepare more and learn from this so that we can respond in the right way in the future.
Lauren: My biggest fear post-COVID is that none of us really know what post-COVID really means. And so, it’s just kind of a lot of the unknown, and the unknown is scary.
Tricia: I think that people will still be afraid to, you know, socialize with each other. Tactile communication, you know, but we have to. We have to. I think, also, that something else, some new disease or sickness will pop up and then we’ll just go right back to where we were. Hopefully not.
Lance: My biggest fear after our COVID pandemic ends is that people will simply go back to living their lives like they did before COVID. Once the threat of infection, hospitalization, and death has decreased, I worry that people will forget. They’ll simply move on.
I fear that people won’t take time to reflect and learn the important lessons from our experiences, both good and bad.
Nell: I think unfortunately the government in general has kind of ignored the disability community, that we are kind of put on the back burner like we’re the last to be thought of. Even though we are one of the largest minorities, and yet, we are not being considered in how things are being run.
Kim: Well, my fear is that the system continues on, and there’s many people with intellectual and developmental disabilities and other disabilities that, you know, we’ve learned a lot of things, but it’s the same themes of staff shortages.
And, you know, I’m not sure if everyone’s been vaccinated and that’s a concern.
Thabiso: I always kind of go around with this fear that I won’t have, you know, the caretakers or care workers and services that I need. So that fear became a really big reality during the pandemic.
So that’s something I’m really cautious about.
Christine: I guess what I would ask is that people be a little more tolerant and a little bit understanding when we don’t hear. I think bringing more awareness to the fact that it’s an invisible disability.
So, we may look like we can hear, but we can’t.
Gabriel: Get vaccinated, please. I mean, it just saves lives. Like, it truly does. I’ve had friends who have gotten COVID post-vaccination, and they’re like, “If I got this without the vaccination, I probably would have been hospitalized.” And beyond that, it’s like when you get the vaccination, you’re getting it not only for yourself, but you’re getting it for your larger community. You’re getting it for people with disabilities. You’re getting it for the elders of this state, of this country, of the people who are related to you.
Lauren: Just be considerate of one another. I think that this whole experience has shown how important it is for people to take care of one another and be thoughtful and be considerate of the fact that, you know, you might be around vulnerable populations as you start to go out in the community post-COVID, and what that might mean for us, and just be thoughtful of that.
Tricia: It would be nice…if we had more programs where interpreters would be able to go out to a DeafBlind person’s home and help with communication through video. And I’m sure there was some that did that, but there’s just too many people afraid. Too much fear.
Lance: I would ask community members to focus on compassion, wisdom and persistence for other human beings, our neighbors, our friends, our families, and ourselves. Take responsibility for addressing the needs of our society and our diverse communities.
Nell: I think it’s going to be the fact, like, where we’ve gone so long without services that we need. And we need the support systems, and if we have to social distance and things like that, we’re not receiving the services and support that we need.
And so, we’re put on the back burner when it comes to health care to be getting the things that we need because, well, we’ve had to go so long. And, unless we have the support system, we often struggle.
Kim: I just want to say people with disabilities are not invisible. They are –
Bring incredible gifts to this world, and I’m tired of the disparities and I’m angry about the disparities that continue.
And I just feel like we need another revolution within the disability community. We’re not done, we’re not gone. There’s a lot of improvements to be made.
And, I guess, to thank the people that have given so much in their professional career, to the field, and direct support staff and the policy makers who, you know, do lead and care about these issues.
But we shouldn’t be shoved over in a corner because they don’t have, necessarily, a voice that they choose to hear or can hear, so.
Thabiso: I just hope that, you know, people don’t forget about the people with disabilities because a lot of times we can’t advocate for ourselves in the disability community. We need other people to advocate for us and stick up for us. And help us to get the rights and to get the services that we need.
So, my biggest, you know, question or asking would be that people don’t forget about us and keep us, you know, at the front instead of being at the back of the line where we’re usually the last people to be recognized. Maybe put us at the front of the line so that we get the assistance we need, since we can’t do it for ourselves always.
Narrator: Thank you.
For more information, contact the Minnesota Council on Disability at phone number 651-361-7800 or email at council.disability, D-I-S-A-B-I-L-I-T-Y at state, S-T-A-T-E, dot M-N dot U-S.