Tikkun Olam: Using the Social Model of Disability to Heal the World

Following is a speech I delivered to Congregation Kol Ami on September 9, 2022.

Shabbat Shalom, and thank you so much to everyone for having me here today. I’m honored and humbled to be asked to speak about disability and inclusion, especially in a congregation that has demonstrated to me so many times exactly what inclusion can look like when it’s done right.

I’m here today as a congregant, as a professional disability advocate, and maybe most importantly as the parent of a young adult who is autistic and has an intellectual disability. I’m here because I have a vision of a world that doesn’t yet exist, but that I see some glimmers of every once in a while. I’m here because I’m worried for my son’s future, but also because I’m filled with hope that the world, and his community, will take care of him when I’m no longer able to. I’m here to share my vision for his future and the future of our community, and I’m so grateful that you’re willing to listen.

I thought I’d start by sharing a story.

On August 5, 2017, in front of his friends, family and community, my son Nate celebrated his Bar Mitzvah, right here at Congregation Kol Ami.

He didn’t read a word of Hebrew, he ditched his kippah halfway through the service, and he never memorized any prayers in preparation, but Nate’s Bar Mitzvah was powerful, beautiful, and absolutely perfect. I loved every minute of it and wouldn’t change a single thing.

With his red hair glowing and his talit draped unevenly over his narrow shoulders, Nate was a vision of Jewish adolescence. He was sweet, he was funny, and he looked smashing in his five-piece suit. He was fully engaged in the ceremony from the minute he hesitantly stepped up to the podium until the very end when he gleefully shoved an entire loaf of challah into his mouth. For almost an hour he was showered with love and acknowledged as the Jewish adult he had become. He did a beautiful job helping his lifelong Rabbi, Rabbi Kinberg, lead the service, and he made his family very proud.

Don’t misunderstand me though — Nate was, as always, authentically Nate. In between successfully telling the congregation when to stand and when to sit, he screeched loudly into the microphone. While he managed to control his urge to touch the Torah, he did partially unzip my dress as I stood in front of the congregation giving my parent speech. He asked for his iPad more than a few times. And did I mention he shoved the entire challah into his mouth?

But that is where the true magic happened; when Nate’s antics and behaviors didn’t disrupt the service; when the faces in the sanctuary didn’t turn to frowns or looks of disapproval; when no one hushed him, made him settle down or urged him to sit still. Not a single person judged him or questioned his right to be there. No one tried to politely ignore his behaviors. No one was inconvenienced or annoyed. Instead, the entire room chose to enjoy the ride. Seventy-five people, at the exact same time, saw Nate being Nate, and loved him because of it. We honored Nate by allowing him to be himself, and it was amazing.

I share this story because, to me, it is a perfect example of a community wrapping itself around an individual, honoring what makes them unique, and making adjustments, both large and small, to ensure that person’s ability to participate in the way of their choosing. It demonstrates a type of inclusion that recognizes the community’s responsibility to adjust for the comfort and access of their individual members, and illustrates how when we focus on a person’s strengths instead of their deficits, incredible things are possible.

As you probably already know, this is not how the world has historically viewed and treated people with disabilities. In fact, it is not how most of the world outside this congregation currently views and treats people with disabilities. But it’s something to strive for and something to work towards, and that’s an important place to start.

I believe that how we think about disabilities, and how we talk about disabilities, affects how we treat people with disabilities. It affects how we include them, and how willing we are to put in extra effort to make space for people who live in the world differently than we do.

With that in mind, I hope you’ll bear with me for a few minutes and allow me to share what we in the disability world call the Models of Disability. These are various lenses through which the general population views and understands disabled people. If you google “models of disability” you’ll find at least a dozen different models listed. I’m not going to explore all of them today because I think there are cookies waiting for us after the service so I want to move things along, but I’ll describe a few I think are most common and impact the way we live and interact with disabled people every day.

First, there’s the “moral” model of disability. The Moral model tells us that disability is a Bad Thing. Capital B. Capital T., and it refers to the attitude that people are morally responsible for their own disability. Often there is a belief that the disabled person did something in a past life to deserve their disability, or maybe their parent committed a sin and is responsible. It sees disability as a tragedy and a pity, and it sees disabled people as a burden who are the cause of their own problems. When communities view disability in this way, there is usually an effort to isolate or remove the disabled person from the general population, to focus on containment and control, and to offer little to no support to the person or their family. If any help is offered, it’s viewed as “charity”.

I know this sounds out of date and old fashioned, but this is not an uncommon way for the world to view and understand disabled people. When Nate was born and his disabilities were emerging, I spent a lot of time asking myself “What did I do to deserve this?” I thought of mistakes I had made in my life and wondered if they were why my child had a disability. I hate that I thought that way for even a minute about this incredible person in my life, but the Moral Model is exactly where my mind went in the early years.

Another model of disability is the Economic Model. In this model, the value of a person is measured by how much they can produce and contribute to the world. Can a person earn a living and support themselves? Can they give as much as they take? Can they produce, and if so, how quickly? With this model, people with disabilities who are unable to contribute and produce in the same way as their typically developing peers are seen as inferior, as unwanted, and as unnecessary. They are seen only as a dollar sign, and often as not worth the cost of their presence. They are judged when they can’t “do their part” or when they need more support than the average person.

This model doesn’t spend any time working to figure out what value each individual does bring to the table. Instead it dismisses a person because of his perceived lack of contribution, and doesn’t really give him or her a second thought.

The next model is called the Medical Model. This way of viewing disability in the world tells us that “yes, disability exists, but we can fix it”. It identifies that some people have deficits — deficits in intellect, in behavior, in verbal communication, in social skills — but that through hard work, therapy, practice and determination, they can catch up and be like everybody else. With this model, the world (or a small group of people in a position of power) collectively identifies an ideal way to be, and tells everyone else what they need to do to get there. It tells disabled people that they are more than welcome to participate in our activities, engage in our programming, and attend our events, as long as you follow the rules and blend in.

For so many people with disabilities, this is a can’t-win situation, and creates a sense of self-loathing that can linger for a lifetime. It encourages people with disabilities to hide their true self, or to not bother to show up at all. We see examples of this every day when children are told they can only participate if they can sit still and follow directions. We see it when a program leader says, “He needs to learn how to do X before he joins us.” We see it every time we encourage a disabled person to hide their differences and to be more like the people around them. The medical model sends a never-ending barrage of messages that a person isn’t good enough the way they are, and that the onus is on them to improve if they want to participate.

The last model I’d like to share is called the Social Model. This one’s my favorite, and where I strive to be as a parent, and a disability ally. The social model tells us that disability is diversity, and that all people have strengths and value to offer the world around them. It encourages us to ask ourselves “what can we do to accommodate this person so they can be included?” or “how can we make sure this person can access this resource?” In this approach, we’re not focusing on deficits, on charity, on economic value, on fairness, or on what the person can do to themselves so that they better fit in. Instead, the social model asks the rest of us what we can do so that no one is excluded. It is a strengths-based model that looks at how each individual person can contribute to make the event, the community, and the world a more inclusive and accessible place.

The story I shared about Nate’s Bar Mitzvah is a perfect illustration of the Social Model of disability. We looked at Nate’s strengths — his charm and charisma — and found a way to shine a light on it for all to see. We never expected him to “get better” or to “catch up” or prove himself ready to have a Bar Mitzvah. We never felt sorry for him, or decided he wasn’t worth the cost or effort of a Bar Mitzvah. Instead, we looked at the traditional Bar Mitzvah service and thought about what adjustments we could make so that Nate could be successful. For example, we shortened the service to ensure he could stay engaged the entire time. We kept the crowd small to prevent Nate from becoming overwhelmed. We spent a lot of time leading up to the ceremony going over what he could expect on the big day so that there were no surprises. We even allowed him to hold his treasured toy during the service because it brought him comfort.

Because she’s awesome, Rabbi Kinberg never once said to us “but we always do it this way”, or “that’s not good enough” or “doing it this way isn’t fair to the other kids”. Instead, by being curious, flexible and open-minded, she made it clear that Nate having a Bar Mitzvah mattered to her, and she made sure we all had what we needed to be successful.

Approaching inclusion through the social model is not always easy. Sometimes it can be time-consuming, labor-intensive, or expensive. It can force us to rethink how we do things, why we do things, and what really matters the most to us. It can require us to question our own values and past assumptions, and make us have to actively rethink beliefs we always held as true.

Sometimes, we might find that no matter how hard we try, we are unsuccessful in our efforts to include someone. We might find that we know what we need for a person to be successful but we don’t have the money or the staff or volunteer capacity to make it happen. Sometimes we might end up having to tolerate a person or behavior or change to a program that really makes us uncomfortable in some way. This type of outlook is rarely going to bring with it easy answers and quick solutions, but the world I envision is worth the effort. The people with disabilities that I know and love are worth the effort. The joy of being part of a community that includes everyone is just so worth it.

I want to live in a world that views and cares for disabled people through the lens of the social model of disability. I want to live in a world where my son’s presence is worth the extra effort it might take to include him. I want to live in a world where we see all people as complex, unique individuals, each with our own strengths, challenges, experiences and dreams, and with an equal right to exist and function in our community. I want to live in a world where we all, and especially those of us in a position of privilege or power, ask ourselves every day, how we can ensure we are preventing the exclusion of people with disabilities. How can we ensure everyone can participate and that everyone feels like they belong?

This is the world I dream of, but more than that, it’s the one I want to leave behind for my son. Please help me work towards this vision by taking some concrete steps. Take time during your day, at your job, at school, at your temple, your gym, or anywhere that you spend your time, and ask yourself whether you have done what you can to be inclusive. Have you asked the neurodivergent people and their caregivers in your community what they need to feel included and supported, or how you can help them more fully engage? Have you created a culture where people are comfortable and safe asking for the help and accommodations they need to be successful? Are people with disabilities being offered leadership opportunities? Have you reached out to people who are struggling to participate, to ask how you can help them be more involved? Are you prioritizing inclusion over tradition and convenience? Are you creating a value of belonging?

Thank you so much again for your willingness to listen to me today, and for being part of a congregation and community that does the hard work, that has the difficult conversations, and that demonstrates genuine care for all people. You are the embodiment of Tikkun Olam, and I’m incredibly grateful to be a part of it.

Shabbat Shalom, and have a wonderful weekend.