"There are four ways, and only four ways, in which we have contact with the world. We are evaluated and classified by these four contacts: what we do, how we look, what we say, and how we say it." ~ Dale Carnegie
True inclusion can only happen if we all work to change attitudes by using language that unites everyone. But too often, society uses language that divides us. Language is a tool used to convey a message. When “special” is used to refer to programs that are intended to support people with disabilities (i.e., Special Needs, Special Education, Special Services), it only serves to divide and isolate us. In my March 2023 blog, “She’s Nobody Special” I explained that the word “special” is just another euphemism to avoid using the word disability.
“I want everyone to understand that it is okay to use the word “disability” or refer to a specific disability if it is important to the message you are trying to convey. Disability is not right or wrong—it just is.” - Kathy Bates
The Institute on Disability (IOD), Disability Rights Center (DRCNH), and the Council on Developmental Disabilities (NHCDD) have joined forces to create the “Stop Special” campaign. Director of the DRC NH, Stephanie Patrick, explains the reasoning behind this campaign, “The disability community has made it clear that the word “special” when used to describe them, is condescending and offensive. The goal is to help the public understand that euphemisms like special can undermine our long-term fight for disability rights and justice.”
I thought it would be interesting to discuss the use of the word “special” with a few people who identify as disabled.
John
Because this topic of labels might be considered personal, I wanted to start with my friend and fellow advocate, 38-year-old John. He has fought many health battles throughout his life. John is legally blind and has a brain injury.
As we discussed the word “special,” he said . . . “The word special often has a positive impact like going to a special event or having a special talent. Standing out and being unique isn’t necessarily a bad thing so long as it doesn’t alienate you. The problem is that the word special has been used to label people with disabilities. In my experience, labels only serve to make people feel different than the rest.”
I agreed with him, “I think you always have a nice way of giving someone the time to express themselves and respect what they have to say. You (John) can make them feel special without using the word. Sadly, that doesn’t always happen for people with disabilities.”
I was really curious at this point to hear John’s thoughts on why this issue should matter to everyone, disabled or not. It was almost as if he was quoting me when he responded.
“We all benefit from a community where everyone is given an equal opportunity to live up to their fullest potential. But labels like “special needs” create a stigma that makes it that much harder for us to prove our worth as equal citizens.”
When asked what school was like John replied, “I received extra help with assignments because my brain injury caused great difficulty with organization and completing my schoolwork on time.”
“The label of “special” is forced upon people with disabilities at a young age. It starts in schools with special education. We need to restructure the way kids are assisted at school. Why can’t there be support for every student who needs it?”
Ryan
John’s friend Ryan stopped by as we were finishing our conversation. Ryan is 32 years old, he’s Autistic. It presented a great opportunity to ask him what he thought of the use of the word “special.” I loved his immediate response, “Well, isn’t everyone special?”
Ryan said he received special education services in school. “I think special education is the same as education; it’s just that society wants to put a label on everything and that’s the label they chose. If I had to hazard a guess, I would say that they chose the word special to avoid insulting us. My driver's license says that I require corrective lenses to drive safely. That is an aid. I feel that any help you receive in school should also be considered an aid.”
Merrie
Merrie is 40 years old and has disabilities of her own, she is also the single mother of a daughter with genetic mosaicism and has a sister with developmental disabilities. She has many close friends with disabilities. She is a home care provider, has done respite for over 20 years, and works as a direct support provider. She has a strong connection to the disability community, so I wanted to hear her opinion.
“I saw how kids in special ed were doing so much better in school and I was jealous of that. I always viewed Special Ed as an advantage that kids were lucky to have. For me, the word special has always meant important. Specialized is derived from special. That means the effort is being made to tailor the educational experience to the student and meeting them where they are.”
I understand where Merrie is coming from. It is not easy to get her daughter the help she needs. Merrie says, “It feels like this campaign is taking a very positive and meaningful word and turning it into something negative.”
Jazz
I switched gears to talk with Jazz, a 22-year-old mom of two children ages two and under. She has a mental health diagnosis. I was impressed that she was able to take the time to answer my questions at all.
There were a couple of points that stood out during our conversation. Jazz said, “It didn’t bother me to get help in school, but they should call it something else besides special education because people don’t like to be singled out and I never felt like special was a good word to use.”
Jazz reminded me that it is important to advocate for ourselves. She says “We can tell others that we don’t want to be labeled as anything. Our disabilities don’t define who we are. We don’t deserve to be singled out.”
Carol
I had the good fortune to meet with Carol, who was my mentor and, in my opinion, a wonderful example of what it means to be a great advocate. We lost touch about twenty years ago, so it was nice to reconnect. Carol spent 10 years on and off from January 1995 to 2014 serving as a member of the New Hampshire House of Representatives.
She shared with me that she got an award for RACS, Regional Action Committees. We went around to different inaccessible businesses and informed them about the Americans with Disabilities Act guidelines. Carol also got the National Leadership Award from the Multiple Sclerosis Association in Concord NH.
At the time, she was the only member of the House of Representatives with a disability. But she never let multiple sclerosis hold her back. She was (and still is) a powerhouse and made it her mission to represent the disability community. Carol is a young 87-year-old who is still very active, hosting the public access television show, “Moving Right Along.”
During our conversation, she reflected on her work. “Parking spaces were not visible when it snowed. We needed signs that could be seen at each parking space. I co-sponsored a bill requiring accessible parking signs. The bill passed.”
After taking time to catch up, we talked about the use of the word special and how it can be used incorrectly. With great conviction, Carol said, “Using the word “special” in education has nothing to do with being special. It is more about equal access to education.” I completely agreed with what she was saying. If access to education is a basic right, then what makes that so special?
She went on to give her opinion regarding the Special Olympics. “We (people with disabilities) are not special people; we are just normal people with limitations. We adapt to the life we are given.”
She continued, “Other people should care about language like special because in our lifetimes every single one of us becomes disabled eventually. I have a strong feeling that everyone is disabled. If politicians would get that straight it would be a nice voting block of people.”
Still every bit the politician, it didn’t take Carol long to get to some of the issues on her mind. “I believe people with disabilities don’t always take advantage of voting. We, as a large group, just accept things and a lot of things don’t happen. It is our responsibility to change that.”
I thought to myself, oh there's the old Carol I remember. I guess I'll be advocating forever just like her.
At the end of our conversation, Carol wanted to drive home the point that having a disability doesn’t make anyone special. “People don’t think we have ordinary lives. At my age, I pretty much do whatever I want.”
Laughing she commented, “People say we are suffering with a disability, but I am not. I am like any other 87-year-old . . . I am suffering with that.”
From Where I Sit…
I interviewed two men and three women varying in age from 22 to 87 years old. Everyone I chose to interview identifies as disabled, and they all lead full and active lives.
Most people would agree that everyone is special to someone. However, the word should not be used to single anyone out. Using a word like special makes disability seem unusual, but in a country where 27% of adults identify as disabled, that’s just not accurate.
All of these interviews included very interesting discussions on educational support and services. I love Carol's point that education has nothing to do with being special, it is more about equal access. I agree with John, we need to restructure the way kids are assisted at school. And Merrie stressed how important it is to meet students where they are. That is why I think that all roads lead to Universal Design for Learning (UDL), a framework developed to improve teaching and learning for everyone. If we agree that there is no such thing as an average student, then we can teach the student who needs a little extra help, as well as the student who needs to be challenged and meet the needs of learners who fall somewhere in the middle.
Change is inevitable. Sometimes it happens so quickly that we don’t even notice it and, sometimes it seems like it takes forever. It's interesting that some practices that not long ago were considered special, are now commonplace. Ramps, curb cuts, and online meetings are perfect examples of this. It works the same way with language. The “Spread the Word” campaign all but eliminated the “R” word. People now understand how inappropriate and offensive the word is. That is exactly the point that is being made with the Stop Special campaign. Disabled people everywhere have to fight for dignity and respect. We just want to live our lives and be seen as equal citizens without people thinking that everything, we need is special. I have the same dreams as everyone else. I want to live a good life; a life of my choosing with lots of friends and family around me. What’s so special about that?
When we know better, we do better. If you are interested in other ways to speak about disability without using “special”, the Stop Special campaign has some tools and information to get you on the right track.
