This weekend I read two great articles about what to say to a special needs parent. And to be honest, I couldn’t have read about this at a better time. With the trip to the IWK being a week away, the articles helped give me a bit of guidance.
We’ve been to the IWK a handful of times and we’ve had small talk with parents in waiting rooms. And you know what? I struggled with what to say. I struggled pretty badly the first time we went, period. We saw so many sick children. I walked through the hospital bleary eyed wondering, “Will that be Emmett? Will that be us?” It was so hard seeing other kids struggle so badly and trying to keep it together. And I didn’t. I’d cry the second we hit a hallway that was empty. When we were in the cafeteria there were kids surrounding us in wheel chairs, hooked up to IVs, breathing aids, you name it. I had to put blinders on so I could get through lunch without sobbing everywhere. But that was almost a year ago, and I’m in a different and better place now. It still affects me when I see children being so sick, but instead of staring at the floor I’m able to look at them and smile now. And smile at their parents, too.
Next week we will be in our own private room with Emmett and there is a playroom on our floor. I imagine we’ll be spending a good chunk of time in there during the day and possibly meeting quite a few families. I still find it difficult sometimes to know how to get conversations going with other parents that have children with special needs. And again, turns out it’s actually pretty simple.
Just say hi.
I’m not sure why the “simple” tends to be lost in these situations. When you’re faced with a person that has a special need, I find people tend to either stare, say the wrong thing (because they really have no idea what to say) or simply don’t acknowledge the person at all. I fell into the latter category. I’m not proud of it. I honestly thought that was the polite thing to do. People who are living with disabilities just wanted to be treated like everyone else. They’re absolutely no different than you or I. I would never want people to ignore Emmett because they thought that would be the polite thing to do. I want people to welcome Emmett with open arms wherever he goes. I want people to talk to him, ask him questions that they would normally ask any typical child.
Here is one article, How to talk to a special need parent.
Here’s an exerpt:
“First thing first, we are parents just like you. We are proud of our children. We want to protect our children and give them as many wonderful life experiences as possible. This is true for all parents, regardless of our child’s abilities. Some of us may need to modify experiences in order for them to be safe or accessible for our children, and some of us may have to miss out on a few, but we want to see our children happy- just like any other parent. Our kids are just like other kids. They like cartoons, music, tickles, books, etc. They would rather talk about ‘My Little Pony’ than politics. When they are upset they want their parent to comfort them. I think if you keep this in mind, it will make interacting with families of special needs children a little more natural.”
I thought that was an eye opener. That particular article gives examples of bad things to say/bad questions to ask and good things to say/good questions to ask. She also links to a really great article about cycles of grief for parents that have children with special needs. But, that’s an entirely different subject that deserves it’s own blog post. Probably one that I will write about in the near future.
The second article I read (which was linked from the one I was just talking about) is from the Texas Council for Developmental Disabilities, Describing People with Disabilities. This article is really, really great. I really encourage you to read it.
Here’s an exerpt:
Be sensitive when choosing the words you use. Here are a few guidelines on appropriate language.
- Recognize that people with disabilities are ordinary people with common goals for a home, a job and a family. Talk about people in ordinary terms.
- Never equate a person with a disability — such as referring to someone as retarded, an epileptic or quadriplegic. These labels are simply medical diagnosis. Use People First Language to tell what a person HAS, not what a person IS.
- Emphasize abilities not limitations. For example, say a man walks with crutches, not he is crippled.
- Avoid negative words that imply tragedy, such as afflicted with, suffers, victim, prisoner and unfortunate.
- Recognize that a disability is not a challenge to be overcome, and don’t say people succeed in spite of a disability. Ordinary things and accomplishments do not become extraordinary just because they are done by a person with a disability. What is extraordinary are the lengths people with disabilities have to go through and the barriers they have to overcome to do the most ordinary things.
- Use handicap to refer to a barrier created by people or the environment. Use disability to indicate a functional limitation that interferes with a person’s mental, physical or sensory abilities, such as walking, talking, hearing and learning. For example, people with disabilities who use wheelchairs are handicapped by stairs.
- Do not refer to a person as bound to or confined to a wheelchair. Wheelchairs are liberating to people with disabilities because they provide mobility.
- Do not use special to mean segregated, such as separate schools or buses for people with disabilities, or to suggest a disability itself makes someone special.
- Avoid cute euphemisms such as physically challenged, inconvenienced and differently abled.
- Promote understanding, respect, dignity and positive outlooks.
What do you call people with disabilities?
Friends, neighbors, coworkers, dad, grandma, Joe’s sister, my big brother, our cousin, Mrs. Schneider, George, husband, wife, colleague, employee, boss, reporter, driver, dancer, mechanic, lawyer, judge, student, educator, home owner, renter, man, woman, adult, child, partner, participant, member, voter, citizen, amigo or any other word you would use for a person.
It’s as simple as that.
Put the person before the disability. For example, you would say “people who are blind, person who is visually impaired” and not “the blind”. There is a chart at the end with lots of these examples to give you a better idea on how to put people first. Try and practice the “People First” language if you can. This is all completely new to me as well, I’m still learning so many things as I go. I’m so thankful for the wealth of information that is at my fingertips and want to share it with anyone I can. I’m doing this for Emmett in the hopes that when he gets older, the world around him will be much more kind, accepting and understanding of people that have special needs.