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One of the biggest challenges of having a disability that is not visible is that people do not realize that you need help. I have found that even if you ask people directly (“I have limited use of my hands, and I cannot open that [can, door, box]. Would you please help me?”), people just look at you blankly. Instead, I have found that it is easier to say that I have had lots of hand and wrist surgery and cannot open that [can, door, box] — or fill out that form, sign myself in, pour from that heavy water pitcher, or grab that file out of a drawer.
This works well because people have a mental model that illnesses are acute (rather than chronic) and that the help that people need is short-term (rather than long-term, indefinite, or progressing). If you say surgery, people will cheerfully help you. If you say pretty much anything else indicating disability, pain, fatigue or longer-term illness, not so much. It is much easier to tell people that you have used up your nine lives for your wrists than to explain Complex Regional Pain Syndrome and other serious rare conditions. And why people should need a reason – or your entire medical history – to honor your request for minor assistance is another story entirely.
Ethical note: Is this lying? Technically no, I have had a lot of hand and wrist surgery – what I am neglecting to mention is that it was almost 20 years ago!
This harmless omission of details works well for strangers and casual acquaintances (although I did have a checker at a local store mention after 14 or 15 years that he had noticed that I wasn’t getting better – that’s one person in hundreds). It probably doesn’t work well for advancing people’s understanding of disability. But if you just want to get your groceries packed light and get on with your day, it works very well.
Cringe-worthy stereotyping note: This is improving as I age, but it is very difficult to get people not to put canned goods and other heavy groceries like milk or other beverages all in one bag. Often, I have to resort to reinforcing terrible stereotypes about aging and gender by asking people to pack the bags “old lady light.”) I die inside each time I do this, but it is often the only thing that keeps people from making the bags too heavy for me to handle without injury. (Please, if you have a better strategy, share it in the comment section.)
If I am in a good mood and have the energy to do so, I will use humor, something like the following: “Please don’t go all Tetris on my groceries – if they are all in one bag, I cannot lift them,” or “I can see that you’re really skilled at packing all of those things in one bag, but I have to ask if you could please put things in separate bags, no more than two heavy things per bag.”
Returning to my first observation, comments like this also result in blank looks and often need to be followed up with the “old-lady light” comment or wrist surgery disclosure to get the point across. I do wear visible sections of Kinesio Tex Gold neurotape, so as a last resort, I will display my taped up hands and wrists.
What about help from colleagues and friends?
If you are fortunate to have patient and empathetic friends and colleagues, they may come to understand that you really do need help opening a lunch package, taking meeting notes, opening a door, refilling a water bottle, etc. However, even then, it is difficult to avoid the appearance of not wanting to do something or expecting that other people will do your work for you. It is also difficult to avoid an imbalance in contributions to a social relationship if you are always or usually the person who needs help.
What about help from students?
Not being able to write by hand poses some serious challenges for teaching and advising. I explain to students that I am very interested in what they have to say, so much so that I’m going to ask them to write things down for me or email me a summary of our meeting, so that I can be sure to follow up with whatever I’ve agreed to do. Most students are surprised but ultimately get it (especially if you reply to their emails right away). I also explain on the first day of class that I work by voice recognition and therefore they might occasionally see some amusing voice recognition errors in feedback on their papers. I encourage them to sound them out to see if that helps with interpretation or to ask me for clarification. To date, the most entertaining of these errors has been “urinalysis” instead of “your analysis.”
What about people who have seen you do something one or two times and assume that you can always do it or do more of it?
What people don’t understand about repetitive-motion injuries or syndromes that involve complex combinations of nerve damage, blood flow, and inflammation is that you may still be able to do some of the activities (limited handwriting, opening a door, preparing food), but at a certain point you have to stop or you risk a flare-up that could last a couple of weeks. When people see you do an activity, they conclude that you can do an activity and don’t realize that you need to pace yourself so that you can brush your teeth at the end of the day. This is super-frustrating.
I think this is also a mental model issue – people think of disability as yes/no in the sense that either people are totally able or they are totally disabled. Of course, there are many chronic pain and fatigue syndromes and other chronic illnesses that leave people with variable functionality somewhere in the middle, depending on how they are doing and what they have already done that day or that week. And there are illnesses with cyclical courses where people may experience great and often unpredictable fluctuation in what they are able to do. Of course, people observing you have no idea what you’ve done earlier this day and form judgments about your capabilities, health, and willingness to contribute based only on what they see in the moment.
What about disability spread?
On the other side of the coin from people who don’t understand how someone who looks healthy and well could possibly need assistance is people who hear the word disability and assume that you need massive constant help with every aspect of your life. The other mental model that interferes with effective help is that disability is total (if you have a disability, you need a wheelchair and have hearing, vision and cognitive impairments as well) or is related only to mobility. For example, if people learn you are disabled, it is very difficult to convince them that you don’t need a wheelchair. I actually spent 20 or 30 minutes on the phone trying to convince an overly zealous conference organizer that I did not need someone to meet me at the airport in a wheelchair. I finally had to say something blunt like the following: “I can walk all day. I just can’t do anything when I get there.” In fairness, I had asked for someone to help with my bag, but the assumption went straight to wheelchair. ARRGH.
What are your ARRGHs and successes?
In the comments, please share your experiences and strategies in navigating invisible disabilities, both in and outside the classroom.