Disability Awareness, Acceptance, and Inclusion: From Stigma to Pride
Jewish Disability Awareness, Acceptance, and Inclusion Month is an opportunity every February for a national conversation about disability, including the different ways people with disabilities – nearly one in four Americans – identify today. Rabbi Edythe Held Mencher, LCSW, director of Union for Reform Judaism’s Presidential Initiative for Disabilities Inclusion, helps us understand why the language of disability is such a powerful determinant of social attitudes, from prejudice to pride.
ReformJudaism.org: What are some of the assumptions we make about those of us with disabilities? What are the consequences of those assumptions?
Rabbi Edythe Held Mencher: Many of us make assumptions about the capacities, happiness, and value of people with disabilities based on stigma, fear, and misinformation. This attitude is called “ableism,” and it is based on the assumption that able-bodied people are the norm and that those of us with disabilities are somehow inferior, incapable, and unhappy.
Like ageism, ableism is a form of prejudice that often leads to isolation, marginalization, and limited education and employment opportunities. Ableism also causes some people with non-visible disabilities to hide their conditions, limiting the ability to access life-enhancing accommodations and preventing others from realizing the prevalence and capabilities of people with disabilities.
If we were to think of disability in terms of demographic populations, what percentage of people would fall into this category?
In the United States, the Centers for Disease Control reports that 22 percent of the adult population in the U.S. is living with a disability; that’s an estimated 53 million people. Disability also becomes more common with age, affecting two in five adults ages 65 and older.
The overall numbers are probably significantly higher because many people choose to avoid the term “disability”,” given many of the negative implications associated with it. Many people in the deaf community, for example, do not consider themselves to have a disability; rather, they see their deafness as part of a distinctive culture.
There are other examples: Some people prefer to say they are autistic rather than saying they have autism. Many folks view autism as a normal human variation – a form of neuro-diversity – rather than as a pathology needing cure.
Many people with psychiatric conditions or ongoing medical conditions reject the word “disability” because of its suggestion of a permanent condition or false expectation of a lower level of performance.
Overall, de-stigmatizing disability will reduce shame and discrimination. It will encourage more of us to add our voices to the growing disabilities advocacy movement – which benefits everyone.
What positive lessons can we draw from the Torah about disability and level of performance?
One of the lessons in the Torah is that many of our most cherished leaders had disabilities and health conditions.
Moses has a speech impediment, yet God speaks through him. After healing from a skin disease, Miriam leads women in celebration as the Israelites move from slavery to freedom. Jacob, whose name is changed to Israel, survives wrestling with an angel and walks with a limp thereafter. Leah and Isaac have visual disabilities but have important voices in the biblical narrative.
It’s clear that Judaism regards all of us as having been created in the image of God and endowed with the holiness and the potential to both contribute and lead.
Some disability rights advocates have moved away from using terms like “people with special needs.” What is the thinking behind this and other language revisions?
The term “special needs” has fallen out of favor with many people because these needs are not special – and the word “special” often also conjures negative associations, like being burdensome, costly, time-consuming, and inconvenient.
Those of us with disabilities have the same needs as everyone: to be loved, to learn and work, to have friends and romantic relationships, to pray and be part of a religious community, to dine at restaurants and travel, and to attend plays and concerts.
Some of us simply need accommodations to accomplish our goals.
What other changes in language should we be aware of?
It’s important that we be mindful of asking people which terminology they prefer. Many disabilities rights advocates have adopted the slogan, “Nothing about us without us!” because too often, programs and policies were put into place without input or leadership from people with disabilities themselves.
Disability should not be all or the first thing we note about a person, so, in recent years, there was a shift toward “person-first language.” This language puts the person before the disability, like referring to a “person with a disability” rather than a “disabled person.” Over time, however, many people in the disabilities community noted that if something is a positive part of identity, we don’t hesitate placing the adjective first – “a brilliant woman,” “a gifted child.”
This has led to shift away from people-first language among some people – for example, instead of “a person with a visual disability,” such an individual may prefers to simply be called “a blind person.”
Many people are therefore choosing language that expresses pride and a positive sense of identity when speaking of a disability. They will say, “I am autistic,” “I am epileptic,” or “I am bipolar” – but just as many people may still prefer to say, “I have autism, “ “I have epilepsy,” “ or I have bipolar disorder.”
To reiterate: It’s important that we ask people with disabilities which terminology they prefer.
As happens with every social movement, we can expect the language of disability to change and evolve. What will stay constant is our Jewish commitment to honoring the dignity, value, and potential contribution of every person.