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Online life opened a door for many who couldn't easily get out before the pandemic, now that door is closing

Many people came together in person for Easter this year – some for the first time since Spring 2019. As Passover and Ramadan continue, people are still gathering. But not everyone is able to, and as pandemic restrictions are lifted, video streams are becoming less available for all sorts of events and meetings.

Because of a relatively rare spinal cord disease called transverse myelitis, Jacob Speaks from Easthampton, Massachusetts, spends most of his waking time lying down.

New England Public Media's Jill Kaufman asked Speaks about his Passover Seder, and about what's happening for him and others as many meetings and family events go off-line and back to in-person.

Jacob Speaks: Well, I'm very fortunate to have PCAs - personal care attendants – and they help enormously so that my wife could go to work and hopefully get me out of the house as much as is possible. And I access the world through my computer. I have a downward facing monitor because I lie flat and that is how I will access Passover.

Jill Kaufman: I have on occasion seen you in the back of the synagogue in Amherst at the JCA. That was before the pandemic. How often were you able to go out and participate physically in a space at the synagogue or otherwise?

From the minute I met the rabbi, he really understood my situation and they would bring in a couch to the back of the synagogue so that I could lie on it. But it was a challenge, obviously, to get there, to get in, to have them put the couch there in the first place.

So in the pandemic, then in at least a particular way, there was a leveling of a playing field for people with and without disabilities. Meaning everyone, if they wanted to get involved in something, had to likely be part of a video platform or a live stream. Can you talk about what's happening right now as different groups like the ACLU or the Disability Law Center are pushing for these municipal meetings or state meetings to keep live streams going?

I think it's vital that live streams and not just live streams, but that things like Zoom, things that are two way things that are participatory (continue). We started at my synagogue so that people who have whatever limitations, or as they're seen as limitations, whether they are physical or cognitive or psychological, would be able to continue to participate in all aspects of synagogue life. And the reason that we started that committee then is because everyone was in the same position.

But our concern was that as things opened up, all of these Zoom accessibilities would shut down and people's worlds will get a lot smaller again, that they are going to be pushed back out.

Do you find for yourself personally that any of this work is crossing over into other parts of your life? Are you going into other venues, so to speak, and and speaking out about the need for this kind of accessibility?

Yes. And I would say not just myself, but all the people in my life, and other people. My wife's a college professor and so she has definitely pushed for some things in her interactions in academia, whether they are within or without her college.

I will say this — maybe it's not the most positive thing for me to say — there was an aspect of [the pandemic] that was really wonderful in that, the world opened up, people developed a kind of empathy.

But there was another aspect that was kind of heartbreaking, which was to see just how quickly the world was made accessible, when those in positions of power needed it to be.

So things went on Zoom in a flash. I mean, a lot of cases in a week you had things where everyone could participate. And to see people now in certain arenas trying to shut those things down is something that I feel much more emboldened to say is just unacceptable.

Something you said in the article where I first read about you, in [the Jewish newspaper] the "Forword," you said something about Passover, in particular [about] during the Seder in the Haggadah, which guides the Seder, that participants are asked to open the door and invite in strangers, and invite in [the prophet] Elijah. And you said in The Foreword, 'when you open the door, are you just cracking the door and saying, hey, if anybody is hungry, come eat, or do you really mean it?'

Well, yeah, I think that's another sort of ethical question that we as a larger society have to ask ourselves – how are we going to open that door, if we are going to make it so that for the person to come in and eat means risking their life?

Jill has been a reporter and host at NEPM since 2005. Before that she spent 10 years at WBUR in Boston, producing The Connection with Christopher Lydon, Morning Edition, reporting and hosting. In the months leading up to the 2000 presidential primary in New Hampshire, Jill hosted NHPR’s daily talk show The Exchange. Right before coming to NEPM, Jill was an editor at PRX's The World.
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