"Disability" vs "Special Needs"
04/11/2013 - 13:50
Sharon Shapiro-Lacks
Sharon Shapiro-Lacks
Sharon Shapiro-Lacks

"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 [sshapiro@yadempowers.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

Led by Jews with disabilities, Yad HaChazakah - The Jewish Disability Empowerment Center provides guidance, resource information, advocacy and support networks for people with obvious or hidden disabilities and their families as we promote access to Jewish community life. www.yadempowers.org

Comments

This is great Sharon. Keep up the amazing work!

Ability vs. Disability

Gary Shulman, MS. Ed.
Special Needs Consultant and Trainer
shulman.gary@yahoo.com

April, 2013

During my more than 24 years as Program Director of Social Services and Training Coordinator for Resources for Children with Special Needs and now as a private consultant and trainer, I have had the great pleasure of asking thousands of parents of children with disabilities to tell me about their children's talents, skills, abilities and passions.  Very often that question has been met with astonishment, "Someone is actually asking me to accentuate the positive as the old song says!"  What a concept!  My heart has always been warmed and my soul and spirit uplifted by the myriad responses that gleefully utter from the lips of these proud parents: "Susan is a gifted musician-she hears a song once then sits down and figures it out on the piano", "My son swims like a fish!" "Thomas has memorized the entire subway system-he is passionate about trains.", "Hector always greets me with a hug and seems to know when I am feeling down-he brightens up my life." ………and on and on.  My response is to have everyone in the room praise and applaud these positive stories of hope, joy and delight.  We of course also move on to discussing the needs, wants, wishes and dreams.  

I often tell the story of an "angel" who blessed this world by the name of Matthew.  When Matthew was born, the doctor who had obviously not been through any sensitivity training, felt compelled to tell the new parents the bad news that after conducting genetic testing, Matthew was determined to have a very rare condition called I-Cell Disease.  "So what does that mean?-when can we bring Matthew home to enjoy and love him?"  The doctor proceeded to elucidate that Matthew should not be brought home but rather institutionalized!  He then felt compelled to share that Matthew's immunological system would over the course of 5 or 6 years, destroy all organs in Matthews tiny body.  "Why put yourself through such misery-he will never grow or develop. Needless to say these spiritual, caring, loving dedicated parents took Matthew home and received Medicaid under the Medicaid Waiver program to meet many of his complex medical needs. He was enrolled in Early Intervention where his miraculous and talented Occupational Therapist Ilaine, only saw the potential skills, talents and strengths.  Matthew learned to happily feed himself, walk with a walker, sing, dance and love……..oh how this child gave and received love.  He was pure love.  This beautiful child positively affected ever human being who was fortunate enough to have the joy of knowing this angel on earth.  I made him pancakes during one visit and he stopped eating for a moment, turned his steroid filled, barely moving body, to face me so he could tell me, "Hey Gary!  These are delicious!" Matthew by the way had a photographic memory and could tell you every player in the  Yankee dugout, give you directions to Grandma's house and direct you to all food items in the supermarket.

There is no miraculous ending here-Matthew died after 6 glorious years on earth.  Six years of love and joy.  Six years of enhancing the lives of everyone who was fortunate enough to have known this miraculous child.  At his funeral were all the friends, neighbors, family members and admirers whose lives had been touched by this angel of humanity.  The doctor who had diagnosed Matthew of course was not present.  His memory lives on in every workshop I conduct. His parents graced me with a gift that I will always cherish.  Knowing that Matthew would soon be leaving this world, they had him record anything that he wanted to say to those people in his life whom he cared for.  Sitting on my dresser is a small photo book with Matthew's picture in it.  There is a button in that photo-book.  When you press that button, Matthew's sweet voice can be heard saying, "Hello Gary-I love you!"  His spirit helps to motivate all parents of children with disabilities who have been told by "professionals" what their children would never be able to do.  Just as the Bumblebee should not fly according to scientists, yet does (because nobody has ever told the bumblebee he can't fly) so too will all children with disabilities continue to FLY as long as we continue to recognize that behind every label of disability there is a human being with abilities, talents, skills and passions…………………..and love to give and receive.  We must never take the hope away!

Behind every child with a label of disability is a child with ability to be cherished, praised and supported.

My needs are not special. They are human needs. My needs may need to be addressed in a different way, but they are no different than those without disabilities. What I face as a person with a disability is not challenges. Everyone faces challenges, not everyone is disabled. To say I have a disability is factual. There are parts of my body that do not work according to the norm (note I did not say normally). In many ways those disabilities disable me. To say anything less is to diminish the very real barriers (mostly created by others - not my body) that I face.

Absolutely agree. I love the quote by Prof. Tim Loreman I put up on my blog a couple of years ago
http://inkyed.wordpress.com/2011/04/01/fridge-magnet-friday-3/

Happy to see "special needs" gone from our vernacular... happy to help share the word.

Gina

I know there are different schools of thought on this and each person has different terminology that they personally identify with, as parents, students, and adults. To me, as a parent of a child with autism, the term "special needs" is outdated and invokes pity, but this term is plastered all over the place in our school system and community. Children or adults with disabilities are no more "special" than anyone else. We all have needs. Johnny uses an iPad and Fred uses a pencil. No person is no more special than another just because they rely on tools that the typical person does not use or do things in another way. I have always been bothered by the term "special education." Really it is just customized learning, which frankly all children should have access to.

Well reasoned piece, and highlights the often asked, "What's in a name?" Well, as we know in our worlds - plenty. I have just launched Australia's first national political party for and by the disability sector www.disabilitypartyofaustralia.org and spent time considering the name of the Party. In agreement with you we must be prepared to use the word be unambiguous and own it. Visit and say hello!

I attend Queens College, and the office for disabled students is called the Office for Special Services. Makes me cringe. As a severely physically disabled male, I do not regard myself as special in any way.

As a counselor for parents & children who have various challenges, I do not think there is a correct term for people with physical & emotional impairments. The word "Disability" may offend individuals stating "Dis-ability" not having ability, whereas many people with challenges are able to work, drive, teach & contribute to society. We still need to develop a term focusing on people with challenges in a positive light!

You've nailed it! Yasher Koach!

Kudos Sharon. As always, you inspire. Keep it up.

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