February is Jewish Disability, Awareness, and Inclusion Month. In recognition of this important initiative, Rabbi Lizzi welcomed Mishkanite Anna Giuliano to speak about her experiences as a member of the disability community. You can listen to this sermon on the Contact Chai podcast or watch it on our YouTube channel.
Hi! I’m Anna or Anna Chaya, I am the founder of Mishkan’s Disability & Chronic Illness Small Group. But you may also know me for my relentless enthusiasm, keen fashion sense, and just being a very jovial gal. I do a lot of scary things, but this may be one of the scariest. I will be discussing things that I’ve only talked about within the disability community to a room of primarily able-bodied people who are not wearing masks. I choose very selectively when I come to crowded places like this, and only when I really want to be there– which I do, here tonight. For reasons I’ll explain in a moment, it’s a big risk for me, and so when I do come to shul or go to a gathering of people unmasked, I also make sure I don’t have any unmissable upcoming appointments in the two weeks that follow, just in case. Living with rare incurable disorders I have a lot of doctors appointments I can’t miss.
I am honoured to be here today as I’m holding all the people who might never have an opportunity like this, including Mishkan’s disability community, the larger Jewish disability community, the disabled BIPOC community who experience abhorrent medical abuse, and the larger American disability population. We will be barely scratching the surface of the disability and chronic illness experience and I chose to discuss a few issues that impact disabled and chronically ill Chicagoans every day. I am a very sensitive bean and I know I will cry at some point, maybe a few times! I also live with aphasia and often lose my words. I’ve been in the house when Mishkan has hosted some wonderful individuals speaking about their experiences in minority communities of many different kinds, and sometimes what they share is new, or hard for people who have not had their experience to hear. As they’ve said before me: if I say anything tonight that is hard for you to hear, I thank you for hearing me, and thank you for being patient, loving and kind.
The disability and chronic illness community is not a monolith. There are many people who are disabled but not chronically ill, and many people who are chronically ill but not disabled. I am someone who is both. No disability and chronic illness journey are the same, this is my experience. I would also like to define the word ableism, which may be new to some of you. Ableism is discrimination and social prejudice against disabled people in favour of able-bodied people. Just like any “ism” ableism comes in many forms.
Anyone can become disabled or chronically ill at any time. It’s just a matter of luck, time, and genetics. We have seen this as millions of people have become disabled because of long covid. I know that this is something that is uncomfortable to hear, and I know for many people the idea of being disabled is the worst thing you could be. But it’s true, and it happened to me. I’ve always been the sick kid, I was the one with a nebulizer strapped to my face colouring angrily while watching all the other kids play in the snow. But I never thought that I would become disabled. Since 2019, my body and health started a drastic decline. I started having severe jerks and spasms in my legs and back, and the pain in my body became so severe that I could no longer stand unassisted for more than 30 minutes. I developed aphasia which I describe as losing all of my words and fearing that I’ll never speak again- even if the words are in front of me. I started losing strength in my arms and hands which forced me to give up my 10-year career as a hair and makeup artist. Worst of all, I broke my favourite mug trying to get it into the microwave, it was such a good shape. But with all of this, I refused to call myself disabled. I said that I was “partially disabled” since I could still walk several blocks with no issue, I could still cook on my own, and I didn’t need a mobility aid. I saw people in my support groups needing intense surgeries, becoming wheelchair users, and even being put in hospice and dying from this disorder. I wasn’t “sick enough” to be “disabled”- until I was. I was struggling with the concept of me being “fully disabled” until a fellow disabled friend told me that the voice in my head saying these things is my internalized ableism and it will kill me if I don’t accept that I am disabled. I slowly accepted I needed more help, I accepted that my life’s focus was now to keep myself alive, and I accepted that to preserve my body I needed to use a mobility aid. In full transparency, I grieve my old life often. Like any kind of recovery or acceptance, it’s a journey. And it freaking sucks.
I knew that the world wasn’t set up for disabled people, but I didn’t truly know until I became a cane user. Just one example, I am a CTA gal, and how I take public transit has definitely changed in the last 4 years. Have you ever noticed insanely narrow many of the platforms are? Or how big the gap is between the train and the platform? Do you ever have those random daydreams about something bad and think UGH I hope that never happens- this is my personal CTA fear. I am (sitcom style) scared that my cane will get stuck in the gap, I will fall, and the doors will keep trying to close on my legs. It could happen! But while the likeliness of that happening is low and a moderate inconvenience for me, for people with larger mobility aids, navigating public transit is significantly more difficult. If someone needs an elevator and it’s broken, they are screwed. For most of the train lines, there are only elevators on every other platform. If a mobility aid user gets off at their stop and the elevator is broken, they will have to get back on the train to get to another station with an elevator and then take a bus going the other way to get to where they need to go or walk/roll for miles there. There is also no guarantee that they will get on a bus. If a bus is too full or the bus driver doesn’t want to be inconvenienced, they won’t let them on. I experienced both of those things firsthand trying to get community members on the bus. In my humble public transit user opinion — public transit must be for everyone and I encourage all of you to learn how to buckle in a wheelchair on the bus because you never know when you may be in that situation. Issues with public transit are just one example of the extreme lack of accessibility everywhere.
In 2020 as we stayed at home to keep ourselves safe from Covid, something interesting happened for our community- we felt supported. People were saying pikuach nefesh, we must protect high-risk people at all costs. So many of our lifelines became stronger. For many homebound or partially homebound folks, the internet has always been the connection to the outside world. Now, everyone was online! Our lives became so much richer. We had opportunities to do anything from taking classes and workshops that were normally inaccessible to us to having wonderful online gatherings with friends. But then as the world started opening up again, many of these opportunities went back to being in person. Able-bodied friends that we were able to connect with safely, now only wanted to hang out in person and go to bars, concerts, restaurants or ‘insert whatever crowded in-person event where no one is masked’. We were left behind. I was left behind. I was the sick little girl with the nebulizer again watching everyone get to live their lives without me.
Then, there was a terrifying shift. The people who were saying “Pikuah Nefesh — we must protect high-risk and disabled people,” started saying things that make us afraid. We hear:
“The president says the pandemic is over, you only have to be concerned if you are chronically ill or disabled, so we don’t have to worry”
“The mortality rate of covid is only 4%, why are we making covid safety choices for just a few disabled people?”
“I don’t understand why we have to bend over backwards for these accommodations that only a few people need”
“If they are so concerned why don’t they just stay home?”
And my personal favourite: “Let them die, it’s just survival of the fittest”
I really wish I was being hyperbolic with the last one. But I’ve seen that verbatim in the comments of disabled people’s posts on Instagram, TikTok, and shockingly the Rogers Park Neighbourhood News Facebook group. I have even heard some of these things within the Mishkan community and the larger Chicago Jewish community. Standing here and saying those things out loud to a room of mostly able-bodied people fills me with anxiety and incredible fear. It’s terrifying knowing that there are people seeing me walking with a cane, even though it’s super cute, and thinking it would be beneficial to society if I was dead so that I won’t contaminate the gene pool. You are hearing a disabled woman saying these things out loud with deep fear. What do those words sound like to you? What do these statements remind you of? Ableism is a tool of white supremacy. It wasn’t just the 6 million Jews that were lost in the shoah, they also took disabled people, Roma people, members of the queer community and anyone they deemed as unacceptable for their “perfect world”. All forms of hate are interrelated. As Jews, we must not be complacent nor support this rhetoric and behaviour — it is our job to actively fight it. It’s our purpose, we are held to a higher standard.
Since it feels like pikchua nefesh no longer applies to the disability and chronic illness community, I propose we look at disability justice through another Jewish lens: B’tzelem Elohim — we are made in the image of G-d. Whether or not you went to Hebrew school or Sunday school, this is one of the very first things that we learn. It’s also one of the first things we forget. There is an unconventional Jewish sage who I think explains this perfectly – Jedi Master Yoda. Star Wars- Torah this is. For those who have not seen the 1980 seminal classic Star Wars The Empire Strikes Back, let me set the scene. Our protagonist Luke Skywalker is on a noble mission to connect to the life-giving energy known as The Force and study to become a Jedi with Master Yoda on the swampy planet of Dagobah. Now, Luke is having a hard time connecting to The Force and is feeling hopeless. His x-wing – stuck in the swamp, his friends — kidnapped and tortured. He can’t connect.
Master Yoda approaches him and says, “Oh my sweet Tatooine child- The Force surrounds us. Binds us. Luminous beings are we, not this crude matter”. Crude matter is anything that gets in the way of us seeing other people as luminous beings. It could be racism, homophobia, fatphobia, housing status, economic status, or ableism. Fighting the crude matter is an ongoing process for all of us, and it is a necessary step in fighting for disability justice and equity.
On March 12, 1990, 1,000 disability activists marched to the nation’s capitol to fight for the Americans with Disabilities Act. It was there that 8-year-old Jennifer Keelan-Chaffins asked if she could get out of her wheelchair and crawl up all 83 steps to reach the capitol, and she did. 60 other activists put their mobility aids to the side and started crawling. They started crawling to say, we are here, we are luminous too, we deserve rights and to live safely with equity. Shortly after, the ADA was passed. The ADA is only 32 years old and far from perfect. No one should have to crawl or prostrate themselves anywhere to have equal rights.
In order for disabled and chronically ill folks to have true justice and equity – everyone must be involved. Especially able-bodied people. We have been screaming for years with little progress. We need new and different voices. Seeing us, fighting for us, and listening to what we need is how we will stay safe. There are words of Torah that have special and deep meaning to me. They were said by a Jewish man whose actions and relentless enthusiasm have always inspired me to stay active and his memory will always be a blessing to me, the late Senator Paul Wellstone: “We all do better when we all DO BETTER.” There are small things that you can do that can improve our lives. At this point in the global panorama and with Biden lifting the covid emergency in May, when the thought of wearing a mask is torture for many people, wearing one is an act of radical love. Listen, I’ve been wearing a mask every time I go outside for the last 3 years so I don’t die or become more disabled, and ya girl either wears a respirator or 2 masks at a time AND I wear glasses. It sucks- trust me, I freaking know. I haven’t been able to wear lipstick in public for 3 years AND I love smiling. I don’t have a choice not to wear a mask. It is a privilege to not have to wear a mask. It is a privilege to choose to not wear a mask. Everyone must acknowledge this privilege. Even if you just wear one on the train, I feel like I can safely sit by you. If you run any kind of class or programming, I implore you to have online options to show our community that you want us involved. If you are planning an in-person event, or even just meeting up with a disabled or chronically ill friend, wearing a mask says that you want us there and you want us to be safe. You must make accessibility and inclusion a priority, putting “what are your accessibility needs” on a form often is not enough. Reaching out and asking how you can make their experience comfortable and safe speaks volumes.
This week we read from Parashat Yitro, the section of the Torah containing the 10 commandments and in my opinion has some of the best midrash. The tradition in synagogue is for everyone to stand and recreate the moment of Sinai, when all Jewish people, and all people who would ever become Jewish throughout time, or be part of the Jewish people by marriage or by family throughout time, were all there together. But not everyone was standing. Babies were in someone’s arms, old folks were leaning on their children, and disabled people were in wheelchairs. People who couldn’t hear – felt the 10 commandments, and people who couldn’t see heard them. God’s voice came to every person in the way that allowed them to be there. It was the ultimate moment of Jewish inclusion.
Mishkan has been my home for 3 years and I am proud to be a member of this community. I’m always enthusiastically inviting people who have also felt left out to experience our community. I am a one-woman Mishkan welcome wagon. I’m sure like many of you, I spent a lot of time shul–shopping. I was always feeling too radical, way too tattooed, and growing up with tortillas on the table instead of challah, I felt that culturally I would never fit in. Mishkan was the first place that felt like I made sense in a Jewish community. I feel comfortable dissecting Torah with my tattoos out and in my bold fashion, and immediately found my own little family inside this community. I am still friends with most of the people I met at the first service I attended! This community has been a huge part of my and my partner’s relationship and has empowered us as we have been learning what it means to be Jewish community leaders. I was attracted to Mishkan because right in the values is the statement “We are radically inclusive”. Racially inclusive. I am grateful for Mishkan’s outdoor services and learning when we have that beautiful Chicago summer weather, the online Passover seder — which I look forward to every year now, online classes, and to livestream every service (shout out to the amazing livestream team! we appreciate you!). And yet, after a while people being “here” and us being “there” still doesn’t feel inclusive. We all deserve to pray, sing, celebrate and learn together safely.
Now, I get that Sinai level-inclusivity is an aspiration, even for a community that wants to make sure as many people as possible can participate. And I get that there are different needs and preferences in this room, and different things that help different people feel included. So for me, and for so many in the chronic illness and disability community, we want you to know that the more people who choose to wear masks, the more we feel we can participate safely — here and everywhere. I ask you to consider all the places that are lifelines to you– the supermarket, public transportation, and even coming to Mishkan — and think about the person you don’t know nearby wearing a mask who might be part of the disability community, who might be me, who might be deeply relieved to see you take out and put on a mask. Consider sticking a mask in your bag for those moments. Mishkan has some great KN95 masks that are put out before each service that say “Love thy Neighbor” on them. KN95s are one of the most effective masks, they are one step down from the N95 I am wearing today.
I challenge us to do these things because I believe in us! Mishkan is special, it’s a place where even if you didn’t fit in somewhere else, you will here. We are all luminous. We can choose radical inclusion, we can choose radical love. Let’s be radical! When we all do better, we all do better.