Friday, October 31, 2014

What International Travel Taught Me About Shame, Ableism, and Invisible Disabilities

I debated a lot with myself whether or not my son and I should join my husband on his work trip to Brazil. He has travelled out of the country a lot, but my son and I never have. My husband has always wanted us to go with him out of the country and Brazil seemed a bit more accessible than some of the other places he has travelled to.

The issues are: My panic disorder is terrible on planes (not due to a fear of crashing or anything like that), I also panic in taxis and on public transportation. Jet lag and sleep disturbance are a huge concern because inadequate sleep and changes in schedule easily trigger bipolar cycling. My son and I have very bad food allergies/sensitivities and have a very limited diet.

The idea of panicking on a plane for 20 hours both ways, being unable to actually go anywhere once we got to Brazil due to the panic in taxis and public places, triggering mania with poor sleep, and being sick due to food we can't eat was just too much for me. I had pretty much decided not to go on the trip- until I asked other people for advice.

Most people told me to go, which I expected, but the reasons why I should go and the inherent ableism in those reasons was shocking to me. What I was asking people for was advice on how to navigate what I would need to go on such a trip. Such as, how likely was it that I could travel to Brazil with food allergies and not get sick? How could you safely take enough anti-anxiety medication to fly for 24 hours? How do other people with these issues travel? Instead, people had all other kinds of reasons they thought I should go, not addressing at all what I was asking.

I was told to go because I needed to expose my son to other cultures so that he knows what diversity is. I was told that it would be good for all of us to know what a minority feels like in a country where they do not speak the language and can't communicate with others. People said that it would be irresponsible and show a lack of interest or care for other cultures and types of people to not travel internationally since I have this chance- as a person of privilege. And of course there were all the misconceptions about what panic disorder really is and all the suggestions to just get drunk on the flight or that it just won't be that bad. Plus, no one really understood the food issue- because obviously we could tell people what we can't eat and just order dishes that don't have any ingredients we are sensitive to. Or because really the food sensitivities are "not real" and we are just middle class, gluten-free, fad following, picky eaters.

So, I stocked up on anti-anxiety meds, found allergy cards in Portuguese for the foods we are allergic to, and we all went to Brazil. I told myself this trip was a privilege and big deal. I followed the advice of others who said it was irresponsible for me, as a white, middle class person to not travel to another country when given the opportunity to be exposed to more diversity.

On the beach in Recife, Brazil. Photo copyright Katie Norris, 2014.
We are now near the last few days of our trip and, seriously, this was one of the dumbest things I have ever done. And I did it because I felt so ashamed of my mental and physical illnesses because I was told by other people that they were, in a way, not real enough. Or that they were not bad enough for me to shirk my responsibility to embrace diversity, be a good parent, and learn about other people.

So, how was all this "advice" I received from other people ableist? Ableism is a form of discrimination, where people who appear able-bodied are shown preference. "Like other “-isms,” ableism can be insidious, and so closely woven in society that people without obvious physical or mental disabilities might not even think about their ableist attitudes and the ableist structure of their society. For example, people with use of their legs may not consider how difficult navigation can be in a wheelchair."

To tell me that I am almost required to go on a trip and that to not go on the trip is a form of social irresponsibility on my part, is pretty ableist. Obviously these people are not taking into account how difficult navigation of life can be with these disabilities. As I had explained to people, the issues about the trip were not at all about not wanting to go to another country or trying to avoid other cultures and people, it was because I feared I was not able enough to handle such a trip. And I was right. Actually, neither my son nor I were able to handle the trip and as a mother I feel my irresponsibility here was great. I basically let peer pressure convince me I had to take him on a trip where he would get physically sick. That was irresponsible. We have been completely unable to find food that is safe for us to eat, no matter how many people here translated for us or what we had written down in Portuguese to show to wait staff, restaurants, and hotels, or the few food items we could find in a grocery store. Plus, I have not slept more than four hours a night for over a week, so the bipolar is not doing so well right now. As a parent, doing something that triggers my illness is also irresponsible.

People with mental illness are often bullied or shamed into doing things they are not ready for through tactics like this. Through misunderstanding of the illness by well-meaning people who do not see the inherent ableism in the assumptions they are making about us. We have to be our own advocates and we have to know there is no shame in the illness we have or our limitations because of it.

I have learned a few things from this experience:

  1. Do not let other people assess your ability. Even if they have similar issues to you. Like some people with panic disorder said it would be fine and to go anyway, but their disorder does not manifest the same as mine does so neither of us should have assumed my ability level and theirs were the same. Oh, and don't let your spouse or partner assess your ability either when you know their understanding of it is not accurate.
  2. Do not let other people shame you into doing things you are unable to do through their use of arguments about social responsibility, bad parenting, or whatever other argument that is not actually about the issue at hand. 
  3. Stop asking other people for advice and trust your own instinct. It is not shameful to know what your limits are at any given time and to honor where you are. 
  4. If you do not do number three, then listen to your friends who tell you to trust your instinct. There were a few, and I regret not listening to their wise advice.

Rev. Katie