You are suspicious when traveling with a visible or invisible disability or chronic illness until you prove you aren’t. By now, my audience knows that I have Type 1 diabetes. I work in the arts and education sector and much of my work is moving from online learning back to in-person trainings. It comes with mixed emotions. I loved working from home. Facilitating creative space for education leaders via zoom without having to pack a bag and prep to be away for a few days was incredibly beneficial for me. It’s no small feat to travel with a chronic illness.
Traveling with Type 1 diabetes (I will speak for this condition since I have lived with it for 35 years) is progressively becoming harder. Last week I had a life-threatening experience because of the hoops I had to go through to catch a plane.
Here’s What Happened…
Now, let me share that I have not needed to get emergency insulin in a very long time because I am that vigilant (as most Type 1’s are) about having my supplies, keeping them cool, keeping them organized, and having insurance to pay for the outrageous cost of insulin and medical tech gear that supports a higher quality of life for my body. I’ve only been uninsured twice in my lifetime. The first time, I was kicked off of my mother’s insurance while I was still a pre-service teacher (which means I didn’t have a job yet and hence no insurance). It was the scariest time of my life. I would pray daily that I wouldn’t have an emergency that would send me to the hospital. I relied on my Type 1 community, who fiercely ensured I had insulin, test strips, ketone strips, or anything else I needed.
The second time I was without insurance was during a month when I left one job for another, and my cobra had not kicked in. I went to fill a prescription for insulin and was met with a payment of $1850. I declined the insulin and asked friends for support.
This is how my Type 1 community works. When we are out of supplies, we call each other. It is a hassle and half to wait on pharma companies to come to the rescue during an emergency. And we certainly understand that hospitals or urgent care will never issue durable medical equipment on the spot.
But I was surprised to experience the absolute panic of finding insulin during this recent trip. When I was twenty years younger, it was no big deal to walk into a pharmacy and buy a vial of insulin for $22. I remember a road trip where my insulin overheated and expired. I was able to find a pharmacy and get a vial of regular insulin. So it was to my shock that I found myself in the middle of the country, unable to get my hands on a vial of insulin. It took 17 hours and 200$ out of pocket to get the one and the ONLY medication that keeps me alive.
Turning my attention to TSA, I have a list of what should have happened:
Things In My Control
- Make sure my name is labeled on anything and everything that must go out of my hands and view. I will now put my name on my pump and all associated medications and medical technology I travel with.
- Set a reminder on the phone. Before going through TSA, I will now set a reminder to check for my belongings. I will put a 20 min timer on before I go through TSA.
- My travel partners will also be asked to support me. I will ask them to double-check that I have everything I need before boarding the plane.
- I will have a “just in case” bag of insulin and gear that I will allow to go through the machines (even though they shouldn’t) should something happen.
Things That TSA Can Do Better
The following content includes graphic references to topics such as unwanted touch.
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- If TSA sees necessary life medication left at their location, they should make a public announcement. Had I heard, “May the owner of insulin, a glucagon kit, and medical devices please return to TSA,” I would have done a double check and gotten myself back to the counter. This is enough information to alert my brain that it could be me and yet vague enough for anyone that might have wanted to collect my meds and medical gear to not have the proper descriptions of it.
- If people with disabilities are TSA pre-approved (or not!), we should not have to suffer gross molestation. My vulva has been touched countless times. Countless. Having to do a pat down every time I travel means random people touching me intimately. My nipples have been grazed, and my bra and underwear have been exposed. My hair has been felt-up. But it’s the vulva touching that feels incredibly invasive and leaves me wanting to shower. Instead, I have to remain calm and catch a plane. As a Black woman, yes, it feels like you’re on the auction block. Your feet and hands are spread apart as a TSA agent gropes around your body… usually, it’s a white woman. I hate it. And I have no choice.
- Provide better training for TSA officers. We all benefit from knowing more about people living with visible or invisible disabilities or chronic illness and how to support them-not make our lives even more difficult.
- There must be an alternative to a pat down. There must. What is it? I’m tired of people touching my body.
What I Am Grateful For…
Gavin Newsom is one of the first politicians to put the needs of insulin-dependent people on the state budget. California is setting aside $100 million to manufacture insulin for people who need it. “Newsom said $50 million will go to the development of low-cost insulin products, while the other $50 million will be used to create a California-based insulin manufacturing facility.” I am so grateful that I live in a state that is taking action to correct a systemic wrong.
With so many rights being stripped away: reproductive rights, voting rights, and environmental rights like access to fresh water, there are things we can do.
- Voice your opinion. Say what matters to you and find others working on the issues you care about. Join. Show up. Activate.
- Compost. This is a non sequitur, obviously but it needs to be said more. Did you know that composting is one of the most direct actions we can take to mitigate the climate crisis as individuals? We are dependent on policy change but until world leaders align we can do our part! “The largest component of landfilled municipal solid waste (MSW) is food scraps.”
The part that feels most necessary to say is that given all the panic and uncertainty, I still had a job to do: facilitate and holding education leaders through a creative and emotionally moving experience. I have to give myself major props for being able to do this dance with diabetes with such grace, a sleepless night, and real uncertainty about how I would get or if I would get my insulin. Much love to all the diabetics who figure it out, take care of each other, move through the very hard days, move through a society that hasn’t made it easy for us to exist, and continue to want to explore and lead and activate a fabulous life experience.