Why this disability advocate doesn't want things to go back to 'normal' after the pandemic

Story Transcript

The pandemic opened up a whole new world for Karin Hitselberger.

Hitselberger is a wheelchair user, and before the pandemic, she says people were often unwilling to make accommodations for her to work and attend events virtually. 

Then the whole world seemed to pivot to remote learning, online events and working from home. 

Now that vaccination rates are rising and more places are opening up, she wants us to take the lessons of the pandemic with us — something she wrote about for Good Housekeeping magazine.

Hitselberger is a Washington, D.C., writer, disability advocate and social worker. Here is part of her conversation with As It Happens guest host Helen Mann. 

So many people say that they can't wait for things to get back to normal. Why don't you share their enthusiasm?

Normal never really worked for me. I have a physical disability. And, unfortunately, the world is not as accessible as it needs to be. There were a lot of things that I was left out of because of inaccessibility. For me personally, with the kind of disability that I have, virtual events and virtual life has opened up a world to me that never existed before.

When did you first become aware that the pandemic might have kind of a silver lining for you?

Pretty quickly. I was already going to online school and … we have internships in my grad program called field work. That shifted to remote, and it worked fine. And I was able to later on get a job at my field placement, and also do another internship, which I never would have been able to do if I had to be somewhere in person. 

Not because I'm doing them at the same time, but because the time it takes for me to get from point A to point B is so much greater than another person that I just wouldn't have enough time in the day to do both.

Can you give us a bit of a sense of what would go into, say, attending a conference for you normally before the pandemic, if you had to go there physically? 

I can't travel alone, so I would have to get somebody else to travel with me. And depending on where it was, I may or may not even be able to go because … I don't really fly because I have too much equipment in terms of, like, accessibility to really take a plane. So it would have to be driving distance from where I live. 

And then it's making sure that not only the conference is accessible, but are the accommodations? One of the things I run into in hotels is that the beds are on platforms and that means I can't use my lift to get into the bed, which sounds kind of silly. But when you're planning on going somewhere, you have to think, like, am I going to be able to stay here? Am I going to be able to do all these things that I normally just do in my apartment?

And presumably, there's the economics, right? … So were you saving money during the pandemic?

Yeah. Because, for example, I don't drive. So … in Washington, D.C., we have wheelchair-accessible Uber. It's called Uber WAV. So I would take an Uber … every time I go to a doctor's office, to a meeting that's too far to take the metro, or the metro is broken down or whatever. 

The biggest, I guess, cost savings, so to speak … is really in energy, because having a disability, I have really limited energy. And being able to use my energy more where I need to and want to, rather than focusing on getting from point A to point B, has been amazing. 

What we have learned from the pandemic is that we can do things differently, and not everyone has to do things the same way. And I think if we can hold onto that lesson and realize that different doesn't mean less valid, we can take something really beautiful away from this horrible experience.- Karin Hitselberger

What other kinds of things have you been able to take advantage of because they're online?

Conferences and, like, social events with friends. I've seen — and I would put "seen" in the air quotes because again, it's virtual — more friends during the pandemic than I normally do. Because I don't have to worry about, is this venue accessible? Can I get there? Will I get home in time for my [personal care assistant]?

I was able to go to my graduation. I've been able to go to everyone's birthdays this year. I have a weekly video chat with a friend that lives across the country. And it's just … much more accepted to do these things. And it's not considered less than, the way it was before. I really think that that's important. 

Were you afraid to ask for these kinds of accommodations before, or did you meet resistance if you tried to do something like that?

I have asked for them in the past and I've met resistance. 

I remember having … to go to a conference. And it was very far from where I lived and I knew I was going to have to drive and it was going to be a two-day experience just to get there, and it was going to be a lot. 

And so I asked if I could go, like, as a virtual presence. My idea was I had seen these iPads that … move around the room. So you can be virtually there ... and you can interact with individual people. And I'd seen this used by other people and I looked it up and I realized that it would be much cheaper to do this than all of my extra travel costs. And I proposed it, and I was told that that was not a possibility.

So I went to the conference, but it was very difficult and it wasn't necessary. 

So when you envision the ideal post-pandemic world, one that works for you, for other people living with disabilities, for everyone, what do you see?

I envision something where virtual attendance is an option alongside in-person attendance.

If you can't get there in person, for whatever reason. It could be disability, could be child care, it could be economics…. There are a lot of reasons why virtual options work better for some people.

Is there any potential downside to this in that it might allow institutions to stop offering in-person accommodation or making in-person events accessible?

Oh, absolutely. And I think that's something we have to be careful of.

I think virtual should be an option … but it's not your solve-all for accessibility. Because even virtual is not completely accessible. Not me personally, but I have a lot of friends with different disabilities for whom virtual is difficult for a variety of reasons.

So I think that what we have learned from the pandemic is that we can do things differently, and not everyone has to do things the same way. And I think if we can hold onto that lesson and realize that different doesn't mean less valid, we can take something really beautiful away from this horrible experience. 

Written by Sheena Goodyear. Interview produced by Chloe Shantz-Hilkes. Q&A has been edited for length and clarity.