Communication and accessibility are basic human rights.
Will you join me in the fight for equality?
Will you join me in the fight for equality?
How does the above picture make you feel? Frustrated? Angry? Trapped? Anxious?Those are all words that came to mind for me. I chose this picture because I feel it accurately depicts the frustration associated with having a disability (or disabilities) that affect your ability to communicate expressively, receptively, or both. For me, both areas of communication are affected. This means I have trouble with expressing myself as well as processing what another person is telling me.
My anxiety, depression, and brain injury all play a role in making communicating a bit more challenging for me than for people without disabilities. First, I'll talk about expressive communication. The very nature of depression and anxiety is very hard to explain, which creates frustration when it comes to expressive communication. When you're not feeling well, it's natural for people to ask why. The problem with depression and anxiety is it's often impossible to pinpoint the reason. People assume that you have to have a reason, other than imbalanced brain chemicals, to feel anxious and/or depressed. So, people with these conditions (like me) attempt to explain something in a way that really can't be explained, which can be extremely frustrating.
In addition to the frustration of trying to assign fake, arbitrary reasons to anxiety and depression, my brain injury makes expressive communication even more complicated for me. Often, things that would be easy for typical people to explain are difficult for me to explain. It's particularly difficult for me to explain things to people that I don't know well. When I need to make "important" phone calls or go to the doctor, I often have to have someone helping me because I have trouble explaining what I need. It will often come out in a way that will make no sense to someone who doesn't know me well. This happens because, first, my anxiety makes me nervous, and then my brain injury doesn't let me formulate what I need to say in my brain at the right speed or in the right order. Needless to say, it is very emotionally taxing to know what you need and not be able to express it. I don't like to admit that I need someone to help me communicate, but the truth is sometimes I do. While I try to be as independent as possible, if it's a matter of me getting critical needs met or not, I ask for help.
And then there's receptive communication, which is a whole separate struggle Again, receptive communication is how you understand what someone else is telling you. Receptive communication was less of a struggle for me before my brain injury. Now, my brain takes longer to process things. When someone gives me multiple step directions, for example, I often have to repeat back what they’re saying, close my eyes and visualize, use hands gestures and/or sign language to “imprint” what they’re saying in my brain. And then comes the most critical step—write it down!!!
This may not sound very complicated but, believe me, there are glitches in the “system” I’ve created. For example, there are times I don’t have something to write with. Yes, I should always keep something with me, but I’m human and things happen. Also, there are situations where I’m around people that I don’t know very well and I’m embarrassed to take out my small notebook and take notes. As much as I try to be open about my disability and share my story so that it can possibly help others, again, I’m human. Sometimes I just want people to think I’m “normal”. So, I try to process the information without any techniques that would be visible to the other person. Then, I usually end up forgetting at least a chunk of the information, as I’m sure you could predict.
One other example of receptive communication being a source of frustration for me is when I was helping at a church dinner one night. As I’ve already mentioned, it takes me longer to process information than most people. I was partnered with another person and we were both responsible for making sure everyone dining in the dining room had gotten their food and drinks and for cleaning up the tables and setting new places when people were finished. I, of course, didn’t initially realize that I was moving slower than the other person. I was just doing the best I could with the resources I have. But soon, I started realizing that when I went to refill someone’s drink, she was already doing it. At one point, she was almost done clearing a table by the time I noticed it needed clearing. I walked over to help her finish clearing the table. Then, I noticed her frustration with me. She said, in an annoyed tone, “Can you clean off that other table since I’ve done the last two?” I tried to apologize, but I don’t think any words actually came out. I went over and cleaned off the other table trying to blink back the tears that were forming in my eyes; I felt embarrassed and ashamed. Every time I find myself in those situations, my initial reaction is shame. I feel ashamed that I can’t do things at the same speed or with the same efficiency as “normal" people. But, I’ve started to let that shame lead to advocacy. People need to stop assuming everyone around them is able-bodied just because they don’t look like they have a disability. I try to respond to these situations now by politely apologizing and saying that I have some medical issues that make it a little harder for me to process things, but that I’m doing the best I can and I am willing to help them if they can just let me know what they need. My hope is that this doesn’t just make the current situation easier for me, but that it makes the situation easier for the next person with any type of disability who encounters this individual. I hope that my explanation helps that person to not assume everyone is exactly like them. Sometimes this happens, and sometimes it doesn’t. But, I have to remember, that I can only plant seeds. It’s God’s job to change hearts. So, I will keep doing my part to plant seeds through education and pray that compassion and empathy for people with disabilities will continue to spread throughout our world.