Image: Imani Barbarin. (Photo by Imani Barbarin)
Today’s guest post is by Imani Barbarin, an African American disability rights activist with cerebral palsy. She is a blogger, a scholar and a vocal presence on Twitter. Ms. Barbarin holds a degree in Creative Writing from Eastern Univerity and a minor in French from the Sorbonne.
If there is one thing that is a constant for us all, it is that nothing is constant. Especially not health. In an instant a life could irrevocably change and the people around that person will be lost as how to interact with the person before them. The prevailing wisdom when encountering a new diagnosis in a friend or loved one is to treat that person as though nothing has really changed. That’s simply inaccurate. They have changed. You can feel it in the hollow laughs and heavy silences. It’s alright to admit. So, how do you move forward together and keep your loved one in your life?
To start, you must come to the heart of the essence of your relationship and recognize that while the expression of your affection may change, the heart of it doesn’t always have to. Try to create a space to allow them to open up to you. Be mindful that they won’t always want to talk about it, but if you’re consistent in your ability to make them feel comfortable and cared for around you, that conversation will come. Don’t be forceful, just be there.
Be prepared for the frustration. Dealing with a new diagnosis means immediate changes in lifestyle that can be difficult for anyone to adjust to. Harder still is to determine how those changes might affect the things we love to do and the people around us. It’s easy to become agitated when we’re confronted with what we formerly loved and enjoyed is no longer able to fit into our lives. Wherever possible, try to examine the limits of what they’re still able to do. If their new diagnosis means sensitivity to flashes of light, forego trips to the movie in favor of trips to museums or parks. Should they now have dietary restrictions, allow them to choose the restaurant (or venue) so they can plan their food choices ahead of time. If they have ambulatory issues, consider low-impact crafts and artwork.
Make sure to plan ahead and keep those invites coming. One of the prevailing narratives is that we’re a burden to our friends and family and at no time do we feel that more than when we notice that the people who love us have stopped inviting us out. We know that accessibility is difficult to find in many public spaces, but do your best to plan ahead when asking us to hang out—make a concerted effort to see to it that we can participate if we wish to. Also, know that even if we can’t make it or cancel often, doesn’t mean that we don’t appreciate being invited. Make sure to check in with us if you see this as an emerging trend, it could be a repeated accessibility issue.
Disability and chronic illness is not like it is in the movies. We’re just people. While media will lead you to believe that there are lessons to be had by being in the presence of someone dealing with a diagnosis, and that we’re all automatically inspirational, it sends the message that we need to be exceptional to be loved or taken seriously. Take us seriously regardless and stand up for our autonomy when others fail to do so. Our health will likely be a lifelong part of who we are with the expected ups and downs. Let life flow. The desire to make our story into something that fits an inspirational narrative is daunting for us and can lead to feelings of failure or further loss—which makes little sense given a diagnosis isn’t a competition.
When it comes to chronic conditions, you can manage symptoms, work hard to reach a place of inner peace, use the anger to change perceptions, but once you start trying to outrun or overcome a disability or illness, you begin to rip yourself apart from the inside out in that pursuit.
Remember that your relationship is unique to the two of you with markers and commonalities that only make sense in that context. It is important to communicate without violating the boundaries your friend has set into place regarding their health. Things may have changed, the expressions of love and friendship may have to be altered, but dig into your relationship down roots and fortify what is there. Accessibility is all about adaptation. Make your friendship accessible.
Thanks for your “inside view”, Imani! You really gave us an authentic sense of life & how we can work together to adapt to new lives.😎🙃💞
Thank you: “once you start trying to outrun or overcome a disability or illness, ” is so true. My allergist, and my parents, told me I could do anything I really wanted to do, as I was growing up. Spending years mostly lying in bed as an adult, I had to convince myself that I couldn’t, because pushing too hard meant crashing.
Wow, Mary Anne, that sounds hard. I’m hoping that life is easier for you now.
I am much healthier now, working full-time for twenty-five years, but I still need to be very cautious, always thinking what my priorities are in case the lesser things don’t get done.