Have you ever traveled to a different country? Or found yourself within a different culture? If you have I bet you discovered there are different sets of manners or rules conduct and etiquette. As in other cultures there are rules of etiquette and manners within the world of disabilities.
The Deaf community has a set of rules as does the blind community. I don’t know much about those communities, but I am a specialist in physical disabilities! I named this blog “Disabiliquette”, in other words, etiquette for the disabled!
1. Don’t Make Assumptions. I have been guilty of this myself. I am more severely disabled and I’ve needed help with most basic physical needs, such as partial help with eating [cutting up meals], dressing, shaving, bathing, etc. I used to think that most wheelchair bound individuals needed this extensive assistance. Then I went to an overnight camp as a teen, and discovered that not everyone in a chair required very extensive care. In fact, one of my neighbors was a nurse and although she became disabled after a fall, she still performed nursing duties for many years after the accident. Don’t assume a person’s abilities or disabilities, allow them to verbalize what they need. Or simply ask them what they need help with.
2. Talk To A Disabled Person In The Same Manner You Would Speak To A Non-Disabled Person – In the past I have had people speak to me like I was a baby, even though I am a grown man with facial hair! This really makes me feel uncomfortable and can be very annoying. I understand that individuals with cognitive or intellectual disabilities struggle to understand higher levels of thought, but they deserve to be spoken to according to their age. Never baby talk or talk down to an adult.
3. Talk Directly To A Disabled Person. It has been my experience that at times individuals will look at my aide or my mom, instead of me, when asking a question. I find that happens in doctor appointments and restaurants. Servers have asked my mom or aide what I want to eat. My mom has mastered that response “I don’t know, ask him” I understand that I can be hard to understand with my speech impediment and there are times my aide or mom have to “interpret” for me, but the questions or comments should always be directed to me. My younger brother is hard of hearing and I have always spoken directly to him, even if he had a hard time hearing. Not looking at the person, or directing the conversation to them can make them feel invisible. I know this is not intentional, but it hurts just the same.
4. Got a Question? Ask! Understanding a disabled person’s needs can be difficult because there a variety of disabilities. If you think someone needs help, all you have to do is ask. There are the other types of questions, “What’s wrong with you?” “Why do you talk like that?” “Why can’t you walk?” “Are you going to die from this?” Although I would prefer people to ask questions rather than stare, sometimes it would be nice if people got to know before asking personal questions. I do, however, appreciate when children ask me questions. It gives me an opportunity to educate them and make them feel comfortable around those who are different.
***Mom’s perspective- Hunter and I have talked about this issue many times. I want him to feel comfortable when we are out in public. Bottom line, I am a mama bear when it comes to my son. There are times I felt the need to protect him, when he really did not need protection. Staring and questions have been a part of our lives ever since he was a baby. There are days I am totally up to answering questions. However, there are days I simply want to be like any other mom enjoying her time with her son. I have gained empathy for those who just can’t simply leave their house and blend. As a mom with now decades of experience (ugh), my advice would be to get to know a person before barraging them with questions. Feel them out, if it appears they simply just want to “be”, then let them “be”.
5. Don’t Be Sorry! When people find out I have CP, most say “I’m sorry” First, you did are not the cause of my challenges! Secondly, when a person says “I’m sorry”, it indicates that my life sucks. In fact, for the most part I have had a great 24 years! There are some aspects of having CP that suck, and I have other obstacles in my life not related to CP that have sucked. However, I have persevered through them all and as a result have become a much better person! Just remember challenges and obstacles happen, and it’s nobody’s fault so we all just need to move on with our lives. So as much as I and many others appreciate your concern, you don’t have to apologize or worry about a thing. Instead of saying “I am sorry”, try saying something like this “Having CP can be challenging sometimes, how have you overcome those challenges?” This shows empathy instead of pity. It also opens doors to conversation and friendship.
***Mom’s perspective- I, like Hunter, hear those words often along with “You are so strong” or “I couldn’t deal with that.” I know these words are well meaning, but there are times those words can sting. Hunter is my greatest joy in life and there is no need to ever “pity” our situation. Yes, CP comes with its challenges. Yes, there are times I am dead tired and need to vent. However, like Hunter, I have enjoyed all almost 24 years of being his mom. My son is strong, kind, gentle and at times a smartass…I could not be more proud of the way he has rolled through life. I am no more special or stronger than any other mom who loves their child. I really like Hunter’s alternative. Rather than say “I’m sorry” ask me about the challenges we face.
6. Parking Disabiliquette 101. Handicapped parking means handicapped parking! If the DMV issues you a handicapped parking sticker, you can park in those spots. You should not park in those spots because it is easier, even if it is just to “pick someone up”. This is inconsiderate because people who are legitimately disabled and need those spots are put at risk when they have to park further away.
Some people feel that because I “roll”, I do not need to park in the front. However, it is always dangerous for me in any parking lot. In my chair I am the height of a 5 year old. Would you want your five year old walking through a parking lot alone? Most vehicles would have a hard time seeing me. I also have a visual perception deficit that adds to the danger of the situation, especially at night and on very sunny days.
When there is a choice between a regular handicapped spot and a Van Accessible spot, please leave the van spots for vans! Vans need twice the clearance of regular vehicles because of the lift space. There are times we have had to load and unload in the middle of the parking lot, blocking traffic and making things even more dangerous.
7. Not Everything Is A “CP Thing”- Just like anyone else, people with disabilities can get other conditions, we all get sick, age, or have other things happen in life. So if I am ninety five and start seeing unicorns in my house I’d be a little concerned! Joking aside, we need to listen to our bodies just as you listen to yours. I find this to be a problem when dealing with doctors. Not every symptom is a result of my CP. I need to be taken seriously and checked over thoroughly when I have a physical complaint.
8. Treat Us Ethically In The Workforce– This is a pet peeve as I’ve known quite a few people that have this problem. In this machine and technology age, there is so many things that can be modified. Passing up a potential worker, simply because they are disabled is no different than passing someone up because they are of a different race. If you’re not sure if a certain position or business space is accessible, at least ask if there’s anything you can do to make the position feasible if their skills qualify them for the job. I know there are many jobs I can simply not do, but are jobs I could not only do with modifications, but could do very well!
9. I Am Not Tired, I Just Have CP Head! If someone with a disability can’t follow or use proper body language please don’t be offended as this could be related to their disability. For example, with my CP, I have a tendency to slouch because my brain has a hard time signaling the motor skills needed to hold myself up. People always assume I am tired or not interested. I remember one time I was watching a documentary in school. The teacher assumed I wasn’t paying attention because I couldn’t keep my head up. Just when I was about to be lectured for not paying attention, I rattled off all the answers. Even if we don’t seem to acknowledge you, it doesn’t mean we don’t. Another example, people with autism may have trouble knowing when or when not to make eye contact. That does not mean they are not paying attention or hear what you are saying.
10. Don’t Count Me Out– If you know someone with a disability, don’t exclude them from activities you assume they can’t do or attend. I have friends,Dave and Krystal, who have very little experience with the disabled. They are incredible because they are always coming up with ways for me to do everything they do. For example, they invited me on a pontoon boat trip. My chair does not fit on their boat, but they did not let that stand in the way. I was transferred to my transfer chair and rolled on to the boat. Then I was transferred to a lawn chair I am comfortable in. When we got to the sandbar, they recruited their friends to help me get into the water! My caregiver, Adam, also loads me into his mustang so we can cruise around town! Brainstorm to figure out ways to make things happen!
***Mom’s perspective- When Hunter was little, it was easy to involve him in many activities. I remember even holding him up on roller skates during a birthday party! As he grew, this became more challenging. I got older and Hunter got bigger. Houses we once were able to visit, I can no longer get him into. This can be very isolating for us. Last Easter, our friends with the pontoon invited us over for dinner. I initially turned them down as I knew I could not get Hunter up their steps. They insisted it would work. Hunter and I planned a “Plan B” for dinner, in case they were wrong. It was difficult to hide my emotions as we pulled into their driveway and I saw a portable ramp extending from their front door! I know this cannot always be the case, but like Hunter said…brainstorm ideas to make it work or come up with an alternative!
This list of “Disabiliquettes” is meant to help you understand the point of view of those with disabilities. I hope this blog helps remove the awkwardness you may feel around people with disabilities. Please keep in mind, this list is my perspective on this topic. Other disabled people may disagree with some of the things I said.
If you have a disability and have something to add to the list, please do so in the comment section. Also if you have any questions, please leave them in the comment section.