A Bit about Ableism

We live in a far better place for disabled people than at any point in history. Open ableism and discrimination are no longer tolerated in the same way. Within Jewish spaces, certain behaviours are now unacceptable. Yet, ableism remains alive, unseen and misunderstood. Many people don’t realize they’re being ableist or deeply hurtful. What is even more troubling is that most ableists come in with either mixed or even good intentions.

Some of the ableism I face comes from people who have no ableist intention. I encounter ableism from people who are stressed and simply trying to do their job. I distinctly remember one program I was on where the director, a member of my synagogue, told me that I could come to him and ask for help at any time. As people were boarding buses for an outing, I started having a sensory overload. I needed to be excused. I was new to the program and didn’t have many people to turn to. I turned to one staff member and asked for help getting the director. Their response hurt, “Sorry, he doesn’t have any time for your problems”. They laughed and walked away. Luckily my mom used her Jewish geography to find another person to help. But what happened later surprised me and opened my eyes to what unintentional ableism is really about.

The staff member in question is, in fact, a very nice person. Two years later, at my final event as part of this program, I got to know them better. I don’t know if this person changed or just had a bad night, but they ended up helping me with another, disability-related accommodation two years later. What disappointed me is how long it took me to trust them again. One stressed comment, two years prior, that they don’t likely remember destroyed any trust for two years. A small moment became a lasting barrier and for a time made me question if I belonged in a program I would come to love. Knowing this person now, I am sure they would apologize. But it was a wakeup call: words matter and they last.

Other Ableism I encounter comes from people who simply don’t respect me as a person. I hope it has nothing to do with my disability; I’m sure that some people just don’t like me for non-Autism related reasons. But in another program, I faced constant ableism. This person, the program director, reassured me and my mother that they supported me but were constrained because of the program. I gave them slack, hoping they were just stressed like my previous story. But, as the program went on though, it became clear: they did not like me. 

Part of this, I think, is that I am bolder than many disabled participants. I don’t give a crap. I am a valued member of the program and deserve respect and equal access. I pushed, and I am sure pushed this person's buttons. Being frustrated in a stressful position like a program director is understandable. Being rude and unprofessional is not. They were a poor communicator, not just with me but with other participants, snapping at me when I asked basic questions. These questions were often related to the accommodations we had discussed before the program. Once, when attempting to exercise accommodations, they told me that it was a waste of their staff's resources. Another time, in front of my friend, they told me that I should be trained to handle my sensory overloads “like a dog with a training whistle”. They repeatedly dismissed my judgment about what I needed and even tried to prevent me from participating at all “just in case” I had an emergency and became a burden. Some of their concerns were legitimate, but their behavior and tone was rude and hurtful. I was lucky that I had supportive friends and that the rest of the staff were kind and accommodating. But, if I had the choice again, I would not go on this program. Despite its potential and the incredible memories I made, it was a hostile environment for me.

A theme I see in both stories is a denial of my agency as self-advocate. Disabled people know themselves best. We know how our bodies and minds work. It is important to note that all programs and institutions have limits and constraints. In a recent podcast with Dr. Michael Kay of my High School (recently graduated), the Leffell School, we discussed the dilemma facing Jewish day schools: they don’t have infinite resources. Institutions have to make tough calls. Institutions should strive to make inclusion a top priority, but one cannot and should not expect perfection. What should be expected is respect and transparency. If you cannot provide something, be honest. Disabled people can then make an educated decision and work with the institution about what is possible.

 The foundation of any inclusion effort is two truths: the job is never finished and that every decision should be based on respect. Organizations that are constrained but do what they can should be applauded. They deserve more funding, staff and resources so they can go further. That is why I volunteer myself as a  resource to the organizations or institutions I am a part of. 

What I write today is both a warning and an opportunity. Programs have the power to change lives. On both programs I described, I made lifelong friends, deepened my Jewish identity, and challenged myself in new ways. I expected disability-related challenges, but, ableism should not have been a part of them. Unfortunately, though this is the norm for many disabled people and I have it better than most. I have grown up privileged in a post-ADA world where trailblazers like Judy Heumann fought so I could speak.  Now we all have an obligation to change this. 

To conclude, ableism, like other forms of hate, is unacceptable. We all fall short and I am no exception. What matters is honesty and a commitment to growth. You do not need to purge yourself of some “ableist demon” that possesses your soul. I do not think anyone is inherently ableist. People say and do terrible things. The answer is clear: apologize, learn, and try to be better. Thank you in advance.