Can you do this? Can you do that? How do you do this? How do you do that? Those aren’t questions people normally are asked on a regular basis, or, if they are, they’re meant to help determine something specific such as a medical condition. However, usually, that type of questioning isn’t a regular occurrence in everyday life. It’s not considered normal to have someone ask questions about your abilities and body functions regularly. When you do get asked those questions, you stop and think, “wait, I can’t do that?” or “do I really need help with that?” Fortunately, it only happens to most people when they have their annual physical. However, for people who have disabilities and medical conditions, unintentional interrogation is part of everyday life.

“I guess I never get used to those questions, and we’ll probably do it again Monday,” I said to my parents as we left an almost two-hour physical therapy evaluation for a new wheelchair. Even though, I’ve done many of these types of evaluations in the past, I didn’t know what to expect. I thought we would talk about what functions I need/want for a new wheelchair. We certainly did that, but, because the therapist had never met me before, she had to ask all sorts of questions about my abilities and get personal details about my life. She had to do this, not only so she could make recommendations for my new chair, but she also needed the information to justify things for the insurance company. I’ll be honest--some of the questions she asked made wonder why she needed to know that, but then she’d explain that it was essential to the chair or the insurance would need to know for justification of a certain part or function. She did this questioning in the nicest way, but it made me think about my situation.

Equipment evals are just one example of when people with disabilities are faced with answering uncomfortable, and sometimes, demeaning questions. Often, when you receive long-term care supports, you have to do a functional screen every year that determines if you qualify and how much support you get. With these, the screener asks you about every aspect of your life. Everything from toileting assistance, to how you do your finances, and everything in between. The screener tries to ask the questions in a very positive manner making it less uncomfortable, but, at least for me, I’m mentally and emotionally drained the rest of the day. If you receive personal care assistance, that’s sometimes another annually screen to determine how many hours you qualify for. Not to sound greedy, but, with those screens, people often try to sound as “needy” as possible to qualify for as much support as they can get. Yes, I’m guilty of this, but I’m also very honest. To be clear, I never lie about my abilities, but I’ve learned to paint a picture of my life in terms of what I need assistance with. It’s just one of those things you learn to do after years of experience.

Doctor appointments are another place where those tough questions are asked. I have about six or seven doctors I see. Each time I have an appointment, the same questions are usually asked. Until I a few years ago, I wondered why they asked the same questions every time. I, now, realize why they do. Unfortunately, things change as you age, and although it’s still considered non-progressive, cerebral palsy affects your body more as you age. This is true for care screenings as well—I’ve realized my abilities and needs do change.

The only way people can help you solve problems is by asking questions to get information. It often seems degrading to the person when the questions are very personal, but it has to be done. When I have to answers all these questions, I try to remember that the person is only trying to help me and she/he is really trying to make the situation as least awkward as possible. It sometimes takes a toll on me having to telling people everything wrong with me and share all what I need assistance with, but that’s part of advocacy—sharing one’s experience. I don’t think I’ll ever get used to answering the hard questions. It’s a part of living with a disability I don’t like because I try not to focus on the abilities I don’t have. When people ask me specifically about my abilities, I get uncomfortable and it does often make me sad. I don’t like being reminded of all the things I’m unable to do. As I’ve said in many past entries, my disability is a part of my life, but it doesn’t define the person I am. People, including myself, have to remember that people ask questions to help understand the situation. Most times, people are just trying to get more information to better understand the situation. We all need to remember the common saying, “there’s no such thing as a dumb question.”

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.