The way we speak says a lot, whether we realize it or not. Especially when we speak to people with disabilities. It is important that we are aware of our terminology and manner of speaking. There is power in our language and in what we put labels on.
The first thing we need to understand is that people with disabilities are not suffering from a tragedy, struggling to become normal, victims, nor are they retarded. To most people, their diagnosis is not their most important characteristic. (to others, it is the most important) We normally do not go around introducing ourselves as, “Hello, I’m diabetic Jane.” So why would we do the same to a person with any kind of disability. They are people first, not their diagnosis. Right? Or maybe this is not always the case…
From watching Born This Way and reading other blogs and articles, I realized something. What I wrote in the ^ above paragraph, it does not apply to everyone. Many people wear their disability or condition with pride. Something John from Born This Way says a lot is “I am down syndrome.” Now, I do not know if he knows the power in that statement, but I do and I know many others do as well. To me, it means that he recognizes that down syndrome is part of who he is, it is not just a diagnosis.
So, where do I stand with the whole people first language thing? I think that whole movement (campaign?) is great. Personally, I use people first language professionally and most of the time generally. But I also think that some people with disabilities don’t care and others purposely want to identify with their disability first. It is a personal decision and who are we to correct someone who chooses one over the other. There have been many times I would see a post from a parent and they would not use people first language and a lot of the comments are correcting this parent. It think it’s crazy to correct someone based on whether or not they use people first language. Like I said, it is a personal decision. Now some people use it in a hurtful or demeaning way, that is not who I am defending!
There have been many times that I have heard someone say, “poor thing”, “how sad”, or even “it makes me feel so sorry” referring to Joel. I get that since he has down syndrome, you can see he has a disability just by looking at him. So just by his disability being visible, we get a lot of looks and phrases like the ones I just mentioned. I know they may say this with good intentions or maybe even out ignorance; they are not trying to be rude but things like that are not acceptable to say. My brother lives a very happy and productive life, and nothing about that is sad. He may be different and require more patience but its not sad.
When speaking to people with disabilities, it is important to remember that they deserve to be treated as an equal. Speak to them first, as opposed to speaking to whoever they are with, it is important to acknowledge them. Give them eye contact and make sure that you give them time to listen, process, and respond. If they are having trouble understanding, please be patient with them.
I know that for me it can be frustrating to constantly repeat myself, but I try not to let that show. Joel is not oblivious to the difference in my tone when I speak, so I need to be mindful of the tones I use and the reactions I give after they respond. In my Joel’s case, unfortunately, I can lose my patience. The more I have to repeat myself, the louder I can get. He notices when this happens and constantly apologizes. Once he starts apologizing I feel terrible and explain to him that he did nothing wrong and he should not apologize.
Another important thing I need remember is to use appropriate language that Joel or other people with disabilities I come across will understand; don’t use jargon, difficult words, or figure of speeches. This is not true for everyone but for most people with cognitive disabilities I think it is. It is also important to understand that sometimes it takes time for them to trust others, so do not take hesitance or silence personal. Everyone is different and not everyone will react the same way and they are not all on the same level. Some know and understand more, so not everything I mentioned on this post applies. The difficulties of one is not the same for all. The important thing to take away from this is RESPECT.