HEATHER, 47, Boston
Heather is a Boston-based disability rights advocate who lives with muscular dystrophy. She identifies as a black disabled woman and is an author and mother, who loves reading, daydreaming, and chocolate. Her blog Slow Walkers See More includes reflections and insight from her life with disability.
In Heather’s video, she speaks about her everyday challenges in quarantine, what she hopes non-disabled people would understand, and gives advice on how to get through these challenging times.
COVID-19 Video Transcript
Isolation
This pandemic has really added another layer of anxiety for everyone, especially for folks like myself, who have compromised mobility and respiratory muscles. So yes, it is a bit terrifying. And I have been in the house for about two months, which is not really that atypical since, in the winter months, I generally wait it out, because of the fickle weather and climate. Especially living here in the Northeast, where one day it could be slick and rainy, icy, and another day it is dry as a bone and sunny. So I am used to waiting it out. This layer and level of heightened anxiety definitely is a game-changer, as it is for everyone. But with a disability, it adds another layer and level of dimension that we have to fold into our new normal. Because this is changing things, drastically.
Challenges
How it is impacting me on a daily basis is things like delayed grocery delivery and PCA services because it has also affected my personal care attendant, who has become sick and has not been able to hang out with me and help me out for close to a month now. Just ways like that really put a damper on things. And delays things in different ways for people with disabilities.
Understand…
What I want people who are not disabled to know is just try and think beyond the box of self and the single lens. This is a collective lens, and a lot of people who live with marginalized identities and have high-risk factors, just be mindful of that. That you are asymptomatic and you are going around and about your day, but you could, in fact, be a carrier and infect someone who doesn’t have that choice. So be mindful of that and considerate and adhere to all the CDC guidelines. That would be very helpful. And stay home when you are otherwise supposed to. And go out only when necessary. So that would be very helpful.
Coping with COVID
Some of the ways I have been coping with staying indoors even more is that sticking to a routine, getting up in the morning, completing my bathroom business, making my bed, and then I go over to the window, slide it open, take a big gulp of crisp, fresh air. And I find that that helps my mood and my mental health. And it sets the tone for the day. I also work on a little gratitude project because I feel like that’s important. And when I really get overly anxious or too nervous about what’s going on today, I lean on to the sage advice my dad always gave me. Don’t worry about the things that you can’t control. And I find that that’s very helpful because it is out of our hands. And the things that we can control, then do that – washing your hands, making sure that you are mindful of who is coming in and out. And limiting visitation and things like that.
I am grateful for…
I am grateful that I do have help nearby. My mom and my sister live nearby. My daughter is not that far away from me. And also, even in my own household, it is just me and my partner. So whenever they come home from work or whatever, and I need something done, that gets taken care of. So those are things and considerations that keep me at an even keel and my anxiety at bay. That’s important.
Advice
I just take it day by day, because we can get through this. We can get through this together. I can make it through. You can make it through. We can do it together. And we just have to think about that.
