Thursday, April 11, 2013
(Appeared on the Jewish Week’s “The New Normal Blog” April 11, 2013
“Words simultaneously reflect and reinforce our attitudes and perceptions; words shape our world.”
— Kathie Snow, “The Case Against ‘Special Needs'”
As a person who has met life with a significant level of cerebral palsy, and as a lover of words and their nuances, I have, throughout my life, tracked the nomenclature that has been applied to those of us who don’t quite fit into established physical, intellectual, communication, sensory, psychological or social “norms.”
Words such as “invalid,” “cripple,” dumb” or “retard” have always hurt me deeply and most people today would understand why. But the term “special needs” — a seemingly innocuous phrase – has disturbed me and many others with disabilities for years.
Admittedly, we haven’t yet come up with a word to identify our population that pleases nearly everyone. We are a diverse group. That said, the term “disability” is the term that was thoughtfully chosen by people with the full spectrum of obvious or hidden disabilities to be used in civil rights and other legislation, such as the Americans with Disabilities Act of 1990 (ADA). Disability describes an identifying characteristic, just as do gender and race. According to the ADA website at http://www.ada.gov/pubs/adastatute08.htm#12102, a person with a disability is anyone who:
(A) [has] a physical or mental impairment that substantially limits one or more major life activities of such individual;
(B) [has] a record of such an impairment; or
(C) [is] being regarded as having such an impairment
Prejudice is anchored in judgments erroneously applied to anyone belonging to a certain demographic based upon his or her identifying characteristics. Historically, for example, women have been wrongly perceived as too weak and emotional to handle the demands of management and executive positions.
Likewise, we people with disabilities, at best, have been perceived as needing and wanting to be under the supervision and care of others; unable to make competent decisions for our own well-being; and unable to contribute to the quality and advancement of our communities, companies, collective knowledge and cultures.
We’ve made tremendous strides toward changing these perceptions and understandings through advocacy and legislation; public awareness campaigns; contemporary films and other media portrayals of people with disabilities; and day-to-day interactions with the public, thanks to the provision of reasonable accommodations.
A reasonable accommodation is a change in or construction of a physical structure, the provision of a tool or service, or the change or flexibility in policy or procedure that makes it possible for a person with a disability to work or to participate in and make use of establishments, services, and programs that are open to the public. A reasonable accommodation does not cause the owner undue financial or operational burdens and does not alter the essential nature of a job, service, product or program. Disability is becoming a respected demographic to which elected officials must pay attention and a customer base to which more companies are marketing their goods and services.
Yet the term “special needs” has gained popularity among American parents, school and social service professionals and community leaders. First came the “Special Olympics” and then “special education.” At some point, people with disabilities began to be referred to as “special,” our needs as “special needs” and our demographic as the “special needs population.” Some justify using the term “special needs population” as a convenient way of referring to a segment of people with diverse characteristics and needs. However, there is a deeper motivation.
By using the term, “special needs” we avoid using the term “disability” which, for some, emphasizes a lack or deficit of which one may be ashamed. We, thereby, mask the disability behind the “special need,” which will hopefully make the disability less noticeable to ourselves and others. Thus, any subconscious feelings of (unwarranted) guilt, embarrassment, or feelings of personal failure that we might feel about having a disability, or having a family member with a disability, can be concealed as well.
However, by not embracing the term “disability,” and by embracing the phrase “special needs”, we inadvertently legitimize and allow for the expansion of the lingering stigma around having or being perceived as having a disability. If we’re embarrassed by having a disability, why should others have high regard for us? Furthermore, by opting to refer to ourselves, our children, and our program participants as “special needs populations,” we become known specifically for our needs and the specialness of our needs. Once again, our neediness, in particular, is showcased and we are identified solely by our imagined limitless needs. This phenomenon feeds right back into the common assumption that people with disabilities are high maintenance. In fact, some people with disabilities or people considered to have disabilities may have very few or no needs for accommodation.
Special needs terminology often evokes pity and anxiety around the ability to meet such needs. It does not serve our cause and efforts to fight needless pity and to become empowered members of our communities instead. Whether we or our family members use wheelchairs, alternate ways of learning, sign language interpreters, large print, Braille, or modified school or work schedules, we all need to embrace the term “disability”. We want society at large to continue to increase its regard for us as “people with disabilities”, an identifiable demographic with economic, social and political influence, who also can be attractive marriage partners and capable parents. If you’d like to join a campaign against using the term “special needs”, please let me know by email [firstname.lastname@example.org].
In my next blog, I will focus in on the word “special” and its oxymoronic effect on how people with disabilities are perceived.
— Sharon Shapiro-Lacks, Executive Director
Yad HaChazakah-The Jewish Disability Empowerment Center
Sharon, You lay the case out very well. I have long been disturbed by the phrase’special needs’ The faith-based communities have become consumed with the term. Thank you for your honest discussion on this subject. Janice Duvall, a person with a disability.