Invisible Disabilities 101

Today, I was reading these great blog posts about chronic illness and the spoon theory. (You might want to read them, too, before you read this post). They inspired me to create a workshop about understanding chronic illness and invisible disabilities. Because I have a background in programming for undergraduate college students, I envisioned that this workshop could be facilitated by people who work directly with students, such as professors, resident assistants, staff members in student activities, multicultural centers, service learning, and others who work on college campuses.

I ought to preface this: I do not personally work with people who have chronic illnesses or disabilities. I also do not have a chronic illness or disability, and I do not speak for anyone who has one either.

I do, however, think able-bodied privilege is something people need to be more aware of, and I think this activity is an easy way to raise that awareness.

In my experience, undergrads are usually introduced to conversations about disability through simulations. You may be familiar–think “disability dinner/lunch/meal,” in which the facilitator randomly chooses a disability for each participant and then proceeds to tie a bandana around one student’s head to cover their eyes, tie an arm for another, give ear plugs to yet another, and so on, and this is supposed to help students “feel” what it’s like to have a disability. The participants then eat their food in slight discomfort, admit this would be a frustrating life to lead, and then never think about it again beyond the 30-minute discussion. Rarely do invisible disabilities and chronic illnesses (besides STDs) make their way into this conversation. Yet, there are millions (up to one in two people in the United States, according to disabled-world.com) in this country living with autoimmune disease, mental illness, hormone imbalances, and degenerative disease.

In the post about the spoon theory, the author talks about the choices a person with chronic illness has to make every day. Students in college hardly ever think of these decisions because they assume they are at the peak of their physical fitness and that no one their age could ever be chronically ill. My hope is that this activity will introduce students who have no prior experience or knowledge to the needs of people living with invisible disabilities.

Invisible Disabilities Activity

Materials:

pencils

paper

*10-15 plastic spoons for each participant

*may be replaced with any number of small objects, such as beads, slips of paper, paper clips, etc., as long as each participant gets between 10-15.

Procedure:

1. Hand each participant between 10-15 spoons, but don’t give everyone the same number.

2. Ask everyone to make a list of tasks they did that day, and tell them to include things they still have to do. Tell them to be very detailed. For example, instead of “I woke up”, tell them to break it down into brushing their teeth, showering, putting on clothes, wearing makeup, walking up or down stairs (if that’s what they did), cooking, eating, etc. Tell them to include chores like homework, laundry, and washing dishes, as well as social activities like meeting friends, shopping, or going to the movies.

3. Instruct participants to count the number of spoons they have. Explain that this represents how much energy they have to do what they need to do in the day.

4. Tell them to count the number of tasks they have written down. Ask how many of them have enough spoons to do everything they have written down (it shouldn’t be that many).

5. Tell them to go back through their lists and pick the tasks they would most like to get done in the day given the number of spoons they have. Explain that if they have skipped a meal, that also costs a spoon.

6. Allow participants to discuss how their days would go differently if they “had” a chronic illness. Draw attention to what choices they had to make. What did they choose not to do? Why did they make that choice? What do they choose to spend time doing? How do they think their lives would change if they had to make choices like this every day, with the same number of spoons for each day? Explain that it may be possible to use more “spoons” than usual in one day, but then they would have fewer to work with the next day, since they would have to recover from having exerted themselves.

7. Discuss ways to be an ally to people with disabilities and chronic illness. For some suggestions, click here.

 

I realize this is a simulation, too. And if there’s anything that needs to be changed or can be improved, please let me know. My goal in creating this workshop was to change the one-sided and reductionist conversations that come from “disability dinners”. I was getting tired of how participants are often more patronizing after leaving those dinners than when they begin. I hope this activity shows that people with disabilities still have agency and independent lives, albeit it’s different than what able-bodied people might imagine.

Something that struck me about the spoon theory post is when the author said she has forced herself to slow down. She has to constantly think about several factors that affect what she can do, and that it is the “beautiful ability” of able-bodied individuals to just do things without thinking.

I want people to reflect on that, on how they have unlimited spoons that they can spend doing whatever they want every day.

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