“Kids under about 7 years of age, are great. They are curious and honest. They would come up to me and want to ask questions about my wheelchair and Halo. Some of the parents would pull them away, like I was not to be bothered or spoken to.”
That quote is from my dear friend Michele Walsh, PT. While I am no stranger to disabilities, having had both a sister and father-in-law who were diabetic amputees, I felt that this is one area where no matter how much exposure we may have to the situation we can never fully embrace what life is like for people living every day with a disability.
In order to bring you the best article possible on being respectful of and communicating well with people with disabilities, I enlisted Michele’s help in the form of an interview which she graciously agreed to do. Her candid answers to my questions will reveal a glimpse into the day in the life of the disabled. (Note: since both our names are Michele I chose to format the interview with Q and A to avoid confusion.)
Q: Michele, thank you so much for agreeing to do this. We have been friends for many years and I appreciate you taking your time to help me and our readers gain a clearer understanding of communication issues that you face. First, why don’t you start off by telling us about your disability?
A: Thanks for asking me – I always welcome the chance to educate on this topic. The short answer regarding my disability is: I was 18, on my way to college when I lost control of my car and became a paraplegic. In a split second my whole life changed. I lived in a small town in North Dakota (pop <3000 back then.) I was taken to the medical office in town, they noted that I had a spinal injury, called for the Air Ambulance and I was taken to the trauma hospital. Diagnosis: C7-T1 spinal cord injury. I remained in the trauma hospital about two months and then transferred to the rehab hospital in Grand Forks for another three months. Wheelchair bound, I started attending college (University of North Dakota (UND)) a year later.
Q: Impressive! What was that like?
A: Like most young people I struggled with what path to choose and went from majoring in computer science and psychology to undecided. One day while visiting the rehab hospital, I was asked about becoming a physical therapist (PT). My immediate thought was – if I was not disabled and had known about it before my injury, it would have been perfect. Life as a paraplegic is no picnic; however, I have had some great experiences and people in my life as a result of it. I have been greatly affected in a positive manner by my physical therapists and I would love to help give someone else back what I had gotten, my independence. I learned that even the able bodied therapist used rehab aides and I could too. I thought about it, applied to the program at the UND, chickened out, withdrew, applied again the following year, got in and accepted.
I graduated and practiced as a physical therapist for about 13 years, some personal issues and lack of aide support caused me to leave the field in mid-2000. I do maintain my license and hope to go back to practicing PT. It is my passion. Since that time I relocated to Florida, went back to school (which is where you and I met), while working at a local tissue bank, received a Health Information Management degree, became a certified RHIT (Registered Health Information Technician), ran a medical record department for a long term acute care hospital, got the opportunity to be a Case Manager which I did for two years and I currently work for an HME (Home Medical Equipment) company in the custom mobility department, involving intake and follow-up for custom manual wheelchairs and power mobility.
Q: Do you notice that people speak to you differently due to the fact that you use a wheelchair versus the way they speak to your friends and colleagues?
A: At times perhaps, although, I am not as sensitive to it as I was upon first being disabled. I have had a couple of experiences in my life where, when eating or checking into hotel that the person I am with will be spoken to even though I am the one paying. I just speak right back to the employee and make the intent of conversation come back to me. It does not happen much; society has gotten better in the 29 years since I have been paralyzed. The thing I most run into, is that people who have not been around anyone in a wheelchair much, have no clue how much it bothers my neck to have to keep looking up at them while speaking, especially if the person is really tall. When having a prolonged conversation with someone in a wheelchair, it is best to either kneel or grab a chair and sit.
Q: People often are afraid to address the elephant in the room so to speak. Would you prefer that people come right out and ask you about your disability or do you consider that rude or awkward?
A: For me, I prefer to be asked what happened (but don’t expect all the details especially if we just met). I think it is far better to ask than to assume something that may not be true. If someone has a cast or walking boot on most people will ask what happened. It should be no different when someone is using a wheelchair.
Q: To follow up to the question above – if you are going out with a group for the first time, do you prefer that they ask you about things that you may need assistance with?
A: Yes, because I am not always the best at asking for assistance. The main thing is to remember that the wheelchair is an extension of my body, you bump it, you bump me. It is my legs. Never grab the wheelchair and start pushing. Would you just walk up to someone and grab them without asking? I certainly hope not. If you have known the person awhile it is different. For example, my friends will walk beside me. Some inclines can create a challenge for me, so they will say, “Here let me help you up this” and that is very appreciated. I have another friend that prefers to hold my hand and pull me when we are on uneven surfaces. The courtesy that they show simply by paying attention to the elements shows great care and respect for me as their friend. It doesn’t go unnoticed.
Q: Although we have the ADA, it sounds like you still come across business or public places that you have trouble accessing?
A: Yes, and I will not frequent them. If it is not important enough to them to help make it easier for me to patronize their business then I won’t. Over the last 29 years, I have been into some businesses through the back door, mainly restaurants and you would not eat there if you could see some of the kitchens that I have seen. Businesses call themselves accessible because they have a ramp however they don’t care if it is too steep, too short, blocked with boxes and takes you into the business along a path that no other customer has to take.
Q: So at the risk of exposing TMI (too much information) – I’m sure you have horror stories of disrespect and miscommunication in public restrooms regarding the handicap stalls. Care to share?
A: Bathrooms are a big issue for me. I need a stall with enough space for my wheelchair and me, where I can close the door and have room to dress and undress. However, most able bodied females want to also use the larger stall. They show no courtesy to the fact that I’m about to pee my pants because I can’t use the other 5 stalls that are open.
Here is a quick story for you. I was down in St. Petersburg years ago for a July 4th concert. As you know, the line to the ladies room is always longer than the men’s so there was a huge wait. One handicapped stall is all there was. By the time I got close to the front of the line, the handicapped stall opened and a kind woman in front of me told the other lady to let me go ahead. She had a fit! She felt like she was next in line and she could use the next available stall regardless of it being designated as handicapped. There have been a few times in my life that in needing to use public restrooms, I have not been able to close the door behind due to the stall being too small and I have had to ask a complete stranger to block the door for me. You never get accustomed to that type of loss of privacy.
Q: You are very independent and do you drive everywhere you go. Dare I bring up the topic of handicap parking?
A: Oh, parking is definitely another issue. I have a van with a lift and need the access aisle in order to get in and out of my van. You would not believe the number of times I have come out to find scooters/motorcycles parked in the access aisle and how badly I want to put my lift down on them and crush them. Not to mention the able bodied disabled (those not requiring the additional space for a lift) that feel entitled to the handicapped parking and park on the crossed hatched access aisle which is NOT a parking space. The access aisle is there for a reason. Remember, if I cannot open my door and lower my lift then I cannot exit and or enter my van. PLEASE be respectful of that.
Q: What would you say your biggest challenge is in the workplace?
A: Most of the places I have worked have had the means to accommodate me and the majority of my co-workers have been awesome. I have to ask for help to reach things at times and people are very willing. Everything can’t be down to my height and I do not expect that.
Q: Do you find that both the older and the younger generations struggle when communicating with a person with disabilities or are there generational differences?
A: Hmmm, not so sure if it is generational or just based on a person’s life experiences. I find that a good portion of the younger generation is self-centered and by that I mean that they just don’t notice those around them and their needs. However, there are those that are very caring, interested and supportive of differences, even disabilities. Communication improves (or should) as we age and mature so perhaps we (the older generation) are more tactful, but I find that it is more of a life experience issue or personality difference if one struggles with communicating with a disabled person. Someone who is outgoing, talks to strangers, enjoys talking to and meeting different types of people usually doesn’t struggle. Even for more reserved people; if they are nurturing and have had contact with people with disabilities they do not usually struggle. Society has improved in education and awareness on disabilities which I think certainly has helped.
Q: What is one pet peeve of yours that you wish people would change in the way they communicate or interact with people with disabilities?
A: I guess I would just leave it as, do not treat a person with a disability differently. If the person looks like they need help, ask/offer. If you’re going to have an extended conversation with someone in a wheelchair, sit or kneel down. The key word being “person” – our wheelchair (cane, hearing aid, assist dog etc.) just makes us a little more unique.
I am so happy to have had the opportunity to introduce you to Michele. All too often we are deep in thought and do not notice those around us, disabled or not. I hope that Michele’s openness will help us all be more aware of the wonderful people we share this world with and that we will continue to teach our future generations the importance of respect!
Thank you. My husband is a Viet Nam vet and is paraplegic. We have been married for 46 years, and we have had all the above experiences. People will look at him and then ask me what is wrong with him, I am very brief with my answer and explain he can hear and you can ask him. Some people want the complete bio which we find very offensive, to the extent if they are just too nosy and rude,we just answer he is lazy. Because of numerous other health issues, I provide 95% of his care and some people do think because he uses a scooter he does not need any other assistance and he is good to go. It is so frustrating.
[…] Respectful Communication and the Disabled: An Interview […]
This is a great article! Thanks for being so open. I loved your point that we always ask about temporary disabilities like leg casts, but not for permanent ones. I hadn’t thought about it that way.