How Do We Talk to Disabled People and Their Loved Ones?
Recently I was brainstorming with some other people involved with improving accessibility in the Jewish community about the kinds of issues we should be focusing on during JDAM (Jewish Disability Awareness Month). The subject of “etiquette,” for lack of a better word, came up. We know that disabled individuals, and often their family members as well, are routinely at the receiving end of awkward comments and interactions that cause discomfort and embarrassment for all parties involved. Well-meaning people are often intimidated by the thought of talking with a disabled person, for fear of causing offense or merely not knowing the right thing to say.
So, how DO you talk to a disabled person? Is it as simple as saying, “Well, the same way that you speak to any other person”? After all, isn’t the whole point to treat individuals with disabilities the same way that all other people are treated, without feeling that we have to walk on eggshells or work from some master list of politically correct words and phrases? I can imagine it now: “When talking to a blind person, be sure not to begin a sentence with the phrase “As you can see . . . . .” At the same time, wouldn’t it be helpful to have an honest, open discussion about why people are often nervous about talking to disabled people, or talking to parents about their disabled kids?
This is not merely an abstract theoretical question for me. As the 46-year-old daughter of cerebral palsied parents, I have spent nearly a half century listening to people struggle with “foot in mouth” disease when speaking to my parents and to me. From a very young age I was tapped to be the interpreter for my mother, who has a severe speech impairment as a result of her CP. People would routinely address me and ignore my mother, even though she was the parent and I the child.
“Who is she?” some people would ask me. “This is my mother,” I would answer. “SHE’S YOUR MOTHER?” was the incredulous response I would invariably receive. “Is she retarded?” some people would ask.
I was embarrassed for my parents to visit at my school. The other children would point and stare, and some asked me directly, “What’s wrong with them?” “They’re handicapped, they have something called Cerebral Palsy,” I would mumble, wanting to sink through the floor.
As I grew older I learned how to more easily handle these kinds of situations. One of my most satisfying moments occurred when I was 13 years old. As a student at a small Orthodox yeshiva elementary school in Brooklyn that only went through 8th grade, I was in the process of applying for acceptance at several Jewish high schools in our area. I went for an interview at one Orthodox girls’ high school in Borough Park. I remember absolutely nothing about my meeting with the head principal, except for one exchange: when, somehow, the issue of my parents came up, and I explained that they had Cerebral Palsy, the woman exclaimed, “Oh, I am so sorry!” I immediately, and somewhat angrily, responded, “Don’t be sorry for me! Cerebral Palsy isn’t a disease! It’s a condition, a disability! My parents are fine!” The principal’s jaw dropped.
Truthfully, I had no interest in going to that school anyway, and had been lobbying my parents intensely to allow me to go to the large co-ed Modern Orthodox yeshiva in our area instead. I was secretly happy that I had shown this woman up, and that the principal of this girls’ school that my father was so enthusiastic about had seemed to be so uneducated and insensitive. I was sure that I wouldn’t be accepted to the school because I had been so outspoken, and perhaps to her mind, insolent, during my interview. In any case, my father had to see that this was absolutely not the right place for me, and more importantly, for THEM. As it turned out, I was accepted at that school, but, luckily for me, my parents caved in the face of my strong resolve and agreed to let me attend the school of my choice, the Yeshivah of Flatbush. Thankfully, at YoF my parents were generally treated by everyone, faculty and students alike, with respect, understanding and decency.
My parents are now 81 years old, residing in a Jewish nursing home five minutes from my house. To this day, I still experience numerous instances of people either talking in a demeaning way to my parents, or ignoring them to speak to me instead. For the most part, these people bear no ill will. They are simply on unsure footing when interacting with people with severe disabilities, and with their loved ones and caregivers. The whole scene makes them incredibly uncomfortable.
It seems to me that the communication/sensitivity problem is an outgrowth of the pervasive lack of understanding of and exposure to disabilities in our world. In so many settings, disabled people must still endure de facto segregation — in schools, the workplace, etc. The list goes on and on. This is especially true of houses of worship, which are exempt from the requirements of the American with Disabilities Act (ADA).
For people to learn how to appropriately interact with disabled people, they must first BE WITH disabled people. Really be with them, as equal human beings, day in and day out, until the experience of speaking to a disabled person or their loved one is the same experience as speaking to anyone else. As long as we continue to allow our synagogues, Jewish schools and other institutions to be insufficiently accessible to people with disabilities, our children will continue to not have the opportunity to engage with their disabled peers in natural settings, and they will unfortunately one day join the legions of adults plagued by “foot in mouth” disease.
Scared that you might unintentionally say hurtful things to the mother of an autistic child? I get it. So am I, sometimes, and I have an autistic nephew! My best advice would be to take a leap of faith and spend a few minutes chatting with that woman. Listen to her, and listen to and talk to her child. Even if her child can’t answer you back. Want to know how to speak to someone with intellectual disabilities without feeling awkward? There is simply no script. The more time you spend talking with that person, and with other people who have intellectual disabilities, the more comfortable you will feel. Some will be nice, some will be cranky, some will be funny and some will be downright hostile. Just like the rest of us. Take it from me, and from my parents: simple, genuine kindness goes a long way, and can overcome even the most serious cases of severely tied tongues.
How do you greet a disabled person?
You say “Hello.”
Guila Franklin Siegel is a guest blogger for Matan. An attorney by training, she worked for over a decade in the areas of Jewish social change and Jewish philanthropy. She lives in the Washington D.C. area.