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Community Voices

Below, you can view a community virtual choir video featuring high-risk and disabled people speaking out about the need for covid equity.

As part of creating this video, we sent out a survey to community members, asking what they wish their local communities understood about what the pandemic has been like for them. We received far more responses than we could include in the video. Scroll below the video to read more responses to the survey.

What adjectives or phrases might you use to describe your experience during the pandemic? I've lived in isolation, more things going virtual started to open up the world to me. As a multiply-disabled, multiply -marginalized person, I've lost all my disability supports and social networks, as well as any potential friends. I lost connection to Jewish community. I lost my medical care and I lost my mental health care. My immunocompromised and disabled children lost their disability supports, and they been left out of education, and been denied FAPE. I and my family been preyed upon by white supremacists and had to flee for our lives, from across the country, using the stimulus money and a tax return. We been injured and left to die--- without the love and support of family or friends, without any community. My family of 5 has no one else in the world, not even grandparents. lonely, stressful, frightening, isolating, exhausting Left behind, fear, unwanted, excluded isolating, frustrating, discouraging Isolated, lonely, uncared for, upset, sad, disappointed in others who I thought were there for me and disabled folks Depressing, alienating, isolating lonely, isolating, desolate, abandoned, devastated Painful, Traumatic, Isolating, Othering Vulnerable and constantly negotiating trade-offs since the same medications that keep me immunosuppresed, and hence at greater risk for Covid-19, are those that give me the ability to walk. When I'm on those meds, my body does not produce the spike protein antibodies that mRNA vaccines produce for most. Increasingly FRUSTRATING as the country abandons a public health focus for a 'do as you please' approach that isolates the at risk community more and more. ISOLATING. isolating, revealing, disconnected, ignored isolating, dehumanizing, like i am worth sacrificing so people can avoid inconvenience Alienating. Terrifying. Devastating. Lonely. Sleepless with anxiety. isolating, confusing, stressful, freeing isolated, enraging, surreal Life-altering, isolating, heartbreaking, lonely Left to die Lonely, enraging, abandonment Complex. Multilayered. Accessibility in some ways was massively enhanced for me and in others really not. Isolating, sadness, anxiety. Deeply lonely, sad, frustrating, scary, stressful, exhausting, grief filled, numbing, devastating isolated, ignored, disregarded, unimportant, gaslighting, lack of regard for my safety

Is there anything that your Jewish community did for Covid safety early in the pandemic, that they have since stopped doing? What, specifically, and how has that felt to you? We were ignored, which as low income, trans, queer, and disabled Jews (one of us is also indigenous) it has hurt immensely. I been enduring erasure and violence in Jewish communities in Israel and in the US (we been through 8 communities in 16 years) for so long, that I ultimately had to give up on trying or I would unalive myself. I stopped going to shul regularly in/after March 2020, due to profound fatigue. If I go to shul, I can't do anything else that day. And I don't value regular shul attendance that much. So I go to shul only very occasionally now and I don't really have a Jewish community per se. None, the frustrating part is that nothing has changed for access for deaf and hard-of-hearing. Online offerings at my Jewish community still does not provide ASL interpreters or captioning. I've joined communities outside where I live that provide these accommodations. When one of my favorite synagogues went mask-optional I did not go for months. I missed it dearly. It's so hard to think about needing a spiritual space but having to miss out because I won't feel physically safe. Requiring masks indoor and hosting as many things outside as possible. Going “back to normal” when the pandemic is still raging feels like a capitulation to all the worst aspects of our society and a rejection of the most core Jewish values. For the first two years of the pandemic, my hometown shul that did Zoom services for the high holidays. It's a small place, and my family and I traditionally read the torah portion on Rosh Hashanah together for the congregation. Because they offered Zoom services in 2020 and 2021, I was able to join my family in our traditional torah reading. However, this year, they have decided to go back to in-person, maskless services only, and I'm devastated. I can't risk traveling or being in a crowded, maskless space. My dad is high-risk too, but i'm worried that he's going to go anyway since he's been doing this for decades and it's so important to him. I'm afraid that I won't get to participate in this family and community tradition ever again. Consistently masking in services and asking people to leave who won't comply with the policy. They are willing to require masks in some group settings but not services when case counts are low enough not to pose significant risk to abled folks. This sends the message that they want to take my labor (on a committee) but not give me community connections in return. Outdoor services which are the safest way for everyone to interact as individual in a community They had classes for Hebrew School on Zoom. They do not do that anymore. Masks were required at the synagogue. That requirement has been dropped. Our family is feeling more unwelcome. A firm mask on indoors policy/covid screening prior to every event to a completely mask optional policy. It's been devestating to see my community choose to make something life saving optional. I want to be in community but I don't feel safe doing so. That's been incredibly difficult to deal with when my community prior to COVID was one of the first places I felt comfortable being authentically embraced as an LGBT+ Jew. I feel like I've lost the trust I was able to build when people refuse to take steps to keep everyone in the community safe. not every service is online anymore. it felt like i was having the one community i still had access to ripped away from me. it was terribly exclusionary and isolating. they are doing hybrid events now and it makes me feel scared for my community as well as grief around continued disconnection and being deprioritized. In 2020, our shul offered zoom services every week once we got a zoom account. Zoom allowed anyone to drop into the services seamlessly from home, and it was comforting to know they were doing this to keep us all safer. In 2021, after a widely-distributed online survey collected feedback and preferences from all the community, our shul's Rosh Hashana and Yom Kippur services were streamed to YouTube. Some people were in the shul in person, but we could chat with others participating remotely, and I could replay the services to hear the shofar again when I wanted to. We were so grateful to have this remote participation option, although concerned about how many people were attending services in person. This year, services for Shabbat have been in person again, more and more often. For this reason, I can't remember the last time I've been able to attend services. Apparently there was an "unofficial poll" as to what people wanted to do for RH and YK services. The shul's board has decided to have in-person services, but outdoors, this year. There will not be a remote option of any kind because "that's too difficult to do in the outdoor setting." I was told that if I wanted to participate, they could perhaps set aside some chairs further away from everyone else, "to make it safer." This feels incredibly isolating and alienating. The shul has many elderly members as well as families with quite young children, including some babies. To not offer a virtual option for services on the holiest days of the year feels ... as though we are not a member of this community anymore. No one cares if they kill us. Yes, early in the pandemic there were mask mandates that made it safer for me and my family to leave the house and do things like make it to medical appointments. The dropping of COVID precautions have left us abandoned. Some Jewish spaces have stopped requiring masks, and it feels like those communities are ready to leave "the pandemic" (read: vulnerable people) behind—even though covid rates are higher than ever. There is, though, a local queer/Left Jewish community that is still holding events outdoors and masked, and it is a heartening lifeline - and in fact, this is one of the only community spaces I'm part of that consistently requires masks, even outside. It's possible, and it's the only way to create inclusive spaces. Zoom services. When they resumed in person services, I learned they don't care if I die as long as they can daven together. Now I have no community because what community can be made with people who would let you die for their convenience? In the beginning there was such a push to call community members, make sure people had supplies and money for essentials, and to create community virtually. All of those efforts have disappeared. I am a part of multiple Jewish communities. One of them went mask-optional a few months ago, a decision I do not support, though I have decided as of now to remain a part of this community. The other is still requiring masks. masks required, home visits/check ins My communities still offer online shabbat and prayer options, though the quality and attention to that space has shifted to in-person activities. I've felt deprioritized and like my participation isn't important to the group enough to make spaces accessible for me to be able to attend or participate.

What do you wish the Jewish community understood about your experience, or the experience of high-risk and disabled people in general, during the pandemic? virtual access needs to be available and better, providing outdated siddurs or providing them only for high prices/ not having words on screen or just not having anything virtual at all makes it very difficult for some of us to have anything to do with the community. That when they shut us out, they are slamming their door in the face of the Shechinah. I understand that people are tired of wearing masks and not worried about their own health. I wish that they would look upon themselves as extraordinarily lucky and, instead of dispensing with masks at the first opportunity, use their good fortune to continue protecting others who are less fortunate than they are. I do understand that for some people, catching Covid may, indeed, feel like a cold. But for me, from experience, it will make me feel significantly more fatigued and ill, including chest pain and shortness of breath, for months after my infection. So rather than simply reveling in your good fortune, it forward by masking even though it's not comfortable? Even with in-person outdoor events, I still need an ASL interpreter. In-person outdoor events does not replace the virtual option. I may not always feel well enough to attend in-person outdoor events and wish I could join online. thinking about disability accessibility is just as important as inclusion of Jews of Color, queer Jews, etc. high risk includes BUT IS NOT LIMITED TO immunocompromised I wish people understood that I have mental health, too, and to weaponize the term mental health to excuse covid behavior is pitting disabled people against each other. I often had to remind so many people that even if my mental health was suffering due to strict covid protocols, my mental health would be even worse in a hospital with COVID. I wish rabbis could provide more pastoral care for disabled folks, particularly young disabled folks, in the time of COVID. That we deserve to be in community in person, that when people refuse to wear a mask it makes me feel like my life is not valued, that communities that claim to value pikuach nefesh and social justice while having policies that don’t protect people from covid are hypocritical and need to commit to a practice of teshuvah I wish people would just wear masks and do things outdoors. what happened to pikuach nefesh? Why are people giving up on all their protections now, when they were so willing and able to do it last year and the year before? 1. By alienating or further disabling me in these times you're throwing away someone who was primed to take on communal leadership. 2. I regularly give platelets at my local blood bank. When the mask policy forces me to choose between giving platelets and going to shul: I assume pikuach nefesh to give platelets, and skip shul every single time. That ultimately we as Jews are judged, most especially this time of year, on how we deal with the inherent vulnerability of life and valuing it equally for all. Our synagogue mentioned 'Pikuach nefesh' (the saving and preserving of lives) as the highest mitzvah at the same time as they removed the mask mandate and said they want to give people more choices. Removing the mask mandate immediately puts some people's lives are great risk and puts up barriers to high risk people being able to attend services. The undercurrent of eugenics that underscores the reaction of non-disabled/high risk people to the pandemic. The fear of how this translates to modern day ugly laws, how we know where the road that begins this way leads, and it is paved in death and despair for all. The disappointment in my community in the disregard of pikuach nefesh and other core Jewish values in so many COVID responses. The isolation in not being able to attend in person events, to celebrate and mourn with my community. The hurt of it all. we are all interconnected, and all of our well beings are intertwined. risking illness is not just an individual experience. it impacts all of us, and some much more than others. it's not a risk we get to decide on individually. I wish the community knew how exhausting it is to be asked, every day, "Oh, do you want me to put a mask on?" Or even worse, it's so upsetting to be told that wearing a mask isn't required. I wear a mask when I leave the house, even if only outside in the garden, in order to try to keep myself and my household and my community safer. Why are so few others willing to do this small thing? we need to keep masking bc pikuach nefesh and including disabled people is necessary because we are people and part of the community That our lives matter. We are not disposable. We also have "mental health needs." When other people aren't willing to wear (good, well-fitting) masks to Jewish spaces (or any spaces, including grocery store, doctors' offices...), I and my family are not safe there. I think they already understand. I think they are knowingly choosing to risk or sacrifice our lives because they want to go 'back to normal.' Remember that 'normal' was already excluding many disabled people. They didn't care then, why would they start now? We wished that their experiences during the pandemic would give them insight into our experiences everyday but they never extrapolated and are quickly forgetting. I wish that the Jewish community understood that COVID is the greatest access conflict we've ever lived through. Actually, I wish people actually knew what access conflict means. I wish disability justice principles were more well-known. I wish people understood the psychic toll of this pandemic. I wish that people understood that those of us who are disabled/non-high risk also experienced accessibility challenges, and even though we are "not high-risk", that many of us know too well how horrible the medical industrial complex is and are trying to do our damnest not to contract COVID. that we feel abandoned by our community, that we don't matter. that it's okay if we have to try and be jewish on our own without everybody. that a lot of times it feels too hard to sustain our spirituality being this isolated and forgotten. I need my Jewish community now more than ever. I've had to look outside my local community to find virtual events that I'm able to attend, which means I'm often not able to celebrate with people locally. I often feel like I only have Jewish community in an online space, but I'd like to have it in my local area as well.

What is the impact on you emotionally and spiritually or existentially when Jewish communities don’t take Covid precautions? It's upsetting, it shows a lack of care not only for others but for Judaism itself as caring for each other, especially in regards to health, is hugely important. I'm in utter shock. I thought there was a line that couldn't be crossed. I was wrong. There have been many lines crossed. My heart is broken. It makes me feel like any statements that they make about the infinite value of every human life are just statements, with no actual actions to back them up. Don't feel like I belong in the Jewish communities due to exclusion and lack of effort to make things accessible. I've withdrawn myself from Jewish communities that don't take Covid precautions and does not provide ASL interpreters and/or captioning. Despite these horrible experiences I have had with disability and COVID during the pandemic, I have found some of the best mentors and disability justice co-conspirators through it. We need more disability justice rabbis, layleaders, and spiritual leaders. It is what has inspired the work I hope to do as a rabbi one day, because I know there are other trans, disabled Jews out there who need the kind of pastoral care that I have accessed, and that sometimes I wish I could still receive. I feel crushed to have felt like I finally found Jewish communities that held me in all my identities, including disabled before the pandemic, only to have them turn away from me now. it's soul-crushing. I want to be part of the jewish community! I want to contribute my art, my voice, my mind and spirit. I want to share in the community, enrich and be enriched by it. But the message that I'm getting, from so many directions, is that I'm not worth the trouble. I'm not worth including. It hurts so much. 1. I refuse to take moral guidance from leaders who don't take pikuach nefesh seriously. 2. It's a complicated emotional duality that I'm both chronically ill/at risk and healthy enough to give the platelets that might well save someone else's life. It's exhausting but I understand that everyone feels exhausted. So we need to think of ways both old and new to come together as communities that can tackle this challenge It is painful feeling that our synagogue is moving forward without us. Depression, anger, devastation, fear, isolation. Bitterness and falling tears coming from where sweet waters should flow. dissociation, hopelessness, dehumanization. i feel like my life is not treated as sacred because i am chronically ill. I feel like my Jewish community is deciding that they are okay with killing us. it makes me not want to be in the jewish community, it makes me want to find other communities, it makes me embarrassed ashamed and upset at my people for being ignorant and harmful The impact is ending up more and more alone, cut off from community. I always imagined my child would be raised deep in community, but synagogue and other communal gatherings are less and less accessible to him as a child in a high risk household. The loss is enormous, and it seems like most of the Jewish community doesn't care about losing us. I feel left out of/excluded from Judaism. They risk my life. They increase the chances of me actually, physically dying. Not having a community also does that because, like all humans, I need support to live. I have been cut entirely out of spiritual and communal life. I have no access to the communal parts of Judaism even though I built my life around it. It also feels pretty bad when your community leaves you to die. One of the major reasons I converted to Judaism was seeing how much community members take care of one another. This past year has made me wonder what I actually saw or if my daughter will never be considered part of that community. I have a multitude of reactions. Holding that clergy burnout is real, that no one's needs are being met, alongside holding my disappointment that synagogues are choosing to loosen restrictions. I am also holding my own complex relationship to this as a disabled person who has returned indoors, who finds being indoors is more physically accessible, and who also holds a deep commitment to cross-disability solidarity. Wishing that we could have an actual, real, honest conversation about this in the Jewish community. Knowing how spiritually far many folks feel right now. Knowing that even when I'm in shul, I often feel that separation. devastated and like my faith is broken into fragments that i have to try and keep together all by myself. some days it feels impossible to fully identify as jewish and that breaks my heart and spirit in a way i'll never be able to fully articulate. I feel like my Jewishness isn't enough. I feel like I'm not enough or like I'm doing something wrong. I feel like I'm being punished for something I have no control over.

Anything else you want to share? Your need for "normalcy" isn't equivalent to our need for basic safety and access. Having different needs shouldn't mean we have to give up our faith and be treated as outsiders. Despite all this, my heart tortures me with undying hope and love for my People. Jewish communities can benefit from the love and wisdom of disability activists. everything they're trying to teach us about the pandemic is relevant to climate change, communal safety around gun violence, trauma, and burn out. we are all better off for listening to the wisdom of ALL marginalized groups, not just the ones it is more politically convenient to hear. When you isolate sick and disabled people, you also isolate your own family and future. It is a denial of what it means to be human. Thank you for making this! We know that people “mean well” but the follow through, particularly when it means diminishment of their experiences in any way, has been extraordinarily lacking. I appreciate being included in this as a disabled, non-high risk person. The accessibility challenges we experienced during COVID were and are manifold and as diverse as we are as disabled people. i want so badly to come home to my community. i hope one day we can. Thank you for the work you're putting into this! I'm so glad someone is taking on the organizing of our community to speak for change on this topic.

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