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disability rights

I Prefer That You Say I’m “Disabled”

“Special needs” indicates that the needs of the disabled are extra, and that can be a matter of life or death.

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Air, water, food, housing, education, and income. These are all things that everyone needs to live—and that includes people with disabilities. And yet, society continues to believe that the needs of those with disabilities are “special.” For me, this is personal.

I am among the one in four in the U.S.—that’s 61 million adults—who are disabled. I was born with arthrogryposis, a physical disability that affects my muscles and joints. I have limited use of my arms and legs and use a power wheelchair. Throughout my life, people have continuously danced around my identity—referring to me as a variety of names, such as “differently abled,” “physically challenged,” and “handi-capable”—unwilling to simply recognize that I am disabled.

Although people still use all these euphemisms and more to describe disability, the one that particularly bothers me is: “special needs.”

First, “special needs” others people with disabilities, suggesting that their needs are different than the nondisabled population. Indeed, Merriam-Webster defines “special”  as “being other than the usual: additional, extra.” By referring to the needs of people with disabilities as “special,” society is saying that our needs are extra. And, when you believe something is extra, it nearly always is perceived as optional or a burden.

Although how we achieve and satisfy our needs may differ from others, the truth is, we all have the same basic needs. While some disabled people may require individualized educational supports, for example, that doesn’t make it “special.” It merely means that they have a different approach to receiving their needs.

In fact, perceiving one’s needs as “special” (i.e., additional or extra) can be a matter of life or death. For instance, emergency-preparedness initiatives often exclude disabled people from their plans or deem them “special needs,” thereby including them as an extra thing to deal with. This lack of inclusivity has led to a number of unnecessary tragedies, such as when two women with psychiatric disabilities drowned in a sheriff’s van during Hurricane Florence. If sufficient contingencies had been made, and people with disabilities were appropriately included in these plans, this tragedy and many others may have been avoided. Disabled people must be part of all emergency-management plans rather than an add-on that may or may not be considered.

Second, “special needs” perpetuates discrimination and conjures negative beliefs about disabled people. People with “special needs” have no entitlements under the law. However, people with disabilities are protected by many federal laws, namely the Americans with Disabilities Act of 1990 (ADA). Hence, “special needs” is not legally grounded, but rather a term used primarily by nondisabled people.

Disabled people experience a range of discrimination and disparities. According to the U.S. Department of Labor, in 2017, only 18 percent of people with disabilities were employed, compared with 65 percent of people without disabilities. Although there are several reasons for the abysmal employment rate of people with disabilities, a notable cause is the ongoing discrimination that disabled people experience in the workplace.

Not surprisingly, poverty is also very prevalent among people with disabilities. In 2016, nearly 27 percent of people with disabilities lived below the federal poverty level, reports the U.S. Census Bureau. Science agrees that the term “special needs” elicits negative perspectives of disability. Indeed, researchers surveyed over 500 people to investigate how terminology related to disability—such as “special needs,” having a disability, or having a specific disability—is linked to how people with disabilities are perceived. This study found that “special needs” is associated with negative beliefs about people with disabilities, whereas “disability” is connected to more inclusive views.

Third, by using euphemisms, such as “special needs,” to describe those who are disabled, people without disabilities are erasing an important aspect of people with disabilities’ identity. In 2016, disability-rights activists began the #SayTheWord campaign, aimed at increasing awareness on the importance of recognizing disability as part of one’s identity. Pivotal to understanding disability as an identity that affects all aspects of one’s life is to actually say “disability” or “disabled” instead of some ridiculous euphemism. Disability rights activist Lawrence Carter-Long, a leader of the #SayTheWord campaign, explained on social media, “If you ‘see the person, not the disability’ you’re only getting half the picture. Broaden your perspective. You might be surprised by everything you’ve missed. DISABLED.”

Indeed, much to many people’s surprise, I, and many others with disabilities, fully embrace being disabled. As I wrote previously for The Establishment, “Having a disability has made me who I am today, and that is something I am truly grateful for.” Because of my disability, I have met wonderful people and had truly amazing experiences.

Of course, being disabled is not always easy. This is particularly true when my wheelchair is broken by an airline, my personal-care assistants do not show up to help me, or my reproductive-rights are being denied. Nonetheless, these instances, and most deleterious experiences I have are the result of living in a world made for people without disabilities rather than because I have a disability. If airlines were held more accountable for the damage they cause, home- and community-based supports were strengthened, and health care providers were trained on working with disabled people, the above challenges I described would not occur.

Having a disability is not a bad thing; nor is it a tragedy. My disability is an integral part of who I am, as are my other identities (e.g., daughter, sister, aunt, friend, and attorney). It is not something that I can ignore, and I wouldn’t want to. Instead, I hope that those around me without disabilities will also embrace my identity as a proud disabled woman!

Recognizing people with disabilities as a vital segment of our society is particularly important at times like now when disability rights continue to be under attack by the Trump administration and Congress. Indeed, the disability community has contended with repeated attempts by the GOP to repeal the Affordable Care Act, which would dramatically decrease access to needed health care and home- and community-based services for thousands of people. There have also been efforts in Congress to pass legislation that would substantially weaken the ADA, leading to less accessibility in the community.

In 2017, Glee’s Lauren Potter participated in the #NotSpecialNeeds campaign, backed by several international Down syndrome organizations, aimed at challenging negative connotations about people with disabilities and pointing out that we all have the same needs. Making this point, Potter aptly notes, “If we needed to wear a giant suit of armor, that would be special.”

We all have the same basic needs. That doesn’t make us special—it makes us human.

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