2021 is Here!
I promised the topics of my blog posts would focus more on fun things I am doing and less about multiple sclerosis (MS) since my last 2020 post.
COVID-19, a new job for Steven, and a pending home remodel (just to name a few reasons) have kept Steven and me from going on as many adventures as we would like. They will pick up again. I promise. Therefore, I wanted to write about a different topic, which is what do you say/do for someone with a physical disability. Questions I had no idea people had until I became disabled.
I have mostly had a positive experience with people out in the public, but I have been asked, "What happened to you?" and a have heard a lot of "Well, you look great!" (an auto-immune disease like mine should not have an impact on my looks, so I never consider this type of "compliment" a compliment or a consolation prize for what I deal with).
On the surface the aforementioned question and comment do not seem harmful, but they are.
I put together the list below to illustrate what not to say or do and why when interacting with someone who has a physical disability.
Suggestions for What NOT to Say or Do for a Person with Disability(ies)
1. Do not help without asking.
Also, keep in mind if help is offered due to an assumption that the person cannot perform the task themselves, the offer may be offensive (I know this gets tricky.).
You may always ask, "Is there anything that I can do to help you?"
The reasons why are plenty and the following are some:
- People with disabilities will typically ask for help if they need it.
- Touching a person or devices used as an extension of that person like canes and wheelchairs, is invading their personal space.
- You could cause an accident. Personally speaking, that is the hardest part about unwanted help, it throws me off, derails my train of thought, and makes me feel like people do not think I can do anything for myself.
No one thinks you are a bad person for saying this. This statement has been uttered by me in the past and to me since becoming disabled. I did not understand the harm in this type of commiseration, but I do now.
It is akin to saying your life is the worst case scenario or that to be disabled equals a life less than good.
3. Do not say, "You are so lucky you have a great spouse who takes care of you."
This is another statement I never thought was offensive until I became disabled and understood what hearing it over and over again made me feel. For me, Steven and I met and fell in love long before I was as disabled as I am now. I take care of Steven just as much as he takes care of me. I do feel very lucky to have won the lottery of husbands, but he is not the sole reason I am here today. We have a true partnership.
4. Do not say, "You are an inspiration."
Let me start by saying, this statement has never bothered me, but I can see why it is not a statement to make to someone going about living life as a person with disabilities. It may seem a little patronizing and remind the person with disabilities how different people believe he/she is by marveling at them for going to the grocery store, for example.
The reason I am okay with this is because I bust my butt every single day and have for years to fight this disease while working full time and managing a lot of things between. Because I work hard on much more than my disabilities, I will take it. 😁
5. Do not speak to the companion of a person with disabilities and ignore the person with disabilities.
This has been happening to me quite a bit and I do not like it at all (Steven has noticed as well)! I feel like I am a woman back in the 1950s. If I am with Steven at a store, more often than not people will address him and ignore me. I have a college degree, work full time, and make important decisions all of the time. I never realized a wheelchair would communicate, "Hey, do not bother with me. I have nothing to offer and clearly I cannot communicate because I am sitting in a chair".
6. Do not ask "What happened?"
I guess when you see a person in a wheelchair and cannot identify by looking at them how they may have ended up in a wheelchair, you may find yourself blurting out, "What happened?". This is another one that has not bothered me, but I understand why it would to most others. It implies an accident occurred or some kind of mistake rather than being aware there are thousands of different reasons someone may be in a wheelchair. If you feel you must know why the person is in a wheelchair, ask, "Do you mind me asking why you use a wheelchair (cane etc.)?"
7. Do not provide unsolicited advice.
It is natural and frankly great so many people care and want to help make things easier for people with disabilities, but the odds of offering them something they have not already thought of are slim to none especially for those of us who have been living with disabilities for a long time.
If you are ever in doubt about what to say just remember the "Golden Rule" maxim and treat others as you would like to be treated.
Bonus
I have a very difficult time answering one very simple benign question and that is "How are you feeling?". The reason it is difficult for me is because I feel great almost 100% of the time, but physically, I am a mess. I am not always sure what people want to know when they ask this question, so I have started answering with the full truth and that paraphrased is "I feel great, but MS is killing me.". Here is a link to a blog post that illustrates why people with chronic illnesses may not like such a question: Answering the Dreaded Question: “How Are You Feeling?” | CF Foundation
Reference
Kelsey Logan. "Answering the Dreaded Question: 'How Are You Feeling?'" CF Community Blog, Cystic Fibrosis Foundation, 24 May 2018, https://www.cff.org/CF-Community-Blog/Posts/2018/Answering-the-Dreaded-Question-How-Are-You-Feeling/. Accessed 27 Jan. 2021.
