Disability History Month: Joanna's Story
Read about Joanna Kemp's, EDI Programme Manager, experience of living with diabetes
Joanna Kemp joined the University in August 2023 as the EDI Programme Manager in the Equality and Diversity Unit. To mark Disability History Month, Joanna shared her lived experience of disability, how changes in medical and societal understanding of her condition have changed and the impact this has had on her life.
Tell us a little bit about you and your disability
“I know that not everyone likes labels, but I find they help me understand who I am, so I have quite a few. In 1996 I gained the label “diabetic” and I have since acquired a few other health conditions that fall under the “disabled” label, as well as being autistic and a member of the LGBTQ+ community.
I was diagnosed with Type 1 diabetes when I was 7 years old. There are a few different types of diabetes and a range of different treatments, so no two people will experience diabetes in the same way. In Type 1 diabetes, cells in the pancreas that produce insulin stop working which means the body is unable to regulate blood sugar levels.
I manage my diabetes by taking insulin injections. I take one sort of insulin once a day to set my blood sugars at an acceptable level, and I take another sort whenever I eat food to counteract the effects of carbohydrates that cause blood sugar levels to rise.
If I take too much insulin, do not eat enough food or exercise too much, my sugar levels can drop too low. This is called a hypo and can be spotted by slurred speech, shaking, incoherent sentences, and in extreme cases, fainting. Hypos feel like I am trying to think of something, but it is just out of my grasp, and I could catch it if everything would just stop. I appear quite irritated when my sugar levels are low, and this is why many diabetics always carry sugar or biscuits.
How does diabetes impact your daily life?
There are some things I legally cannot do. For instance, I could not apply to be a bus driver or pilot. My driving license is also restricted to 3 year and I need to undergo regular medical assessments to ensure I am fit to drive.
The medical side of diabetes in theory does not have a huge impact on my life if everything is going smoothly. However, no two days are the same and being on my period, being ill, hot weather, too much or too little exercise, drinking alcohol, stress, eating too early or too late, and many other small things can all impact on how my body responds to the insulin I take. Diabetes is a constant balancing act. This has made me quite able to adapt with change, as I am constantly doing this in my day-to-day life.
The main way diabetes impacts my life is the assumptions that people make about me based on it. Growing up in the 90s, teachers would often punish me for refusing to eat certain foods or tell me that if I just ate like a “normal” person, my diabetes would go away. I wasn’t allowed to take part in PE in case my sugar levels dropped and I fainted. When I did have a hypo, my parents were called to explain why I “didn’t know how to control my diabetes.” I understand that it was due to a lack of readily available information, but it still had a huge impact on me. I felt ashamed of my body, and I developed mental health problems and an eating disorder.
The main way diabetes impacts my life is the assumptions that people make about me based on it
As I got older, if my blood sugar levels dropped, people would assume I was drunk, or panic when they saw me with a needle, probably assuming I was taking illegal drugs. And I still have people assuming diabetes is the result of overeating and tell me to “just eat a salad.” A lot of medical professionals automatically assume that health problems are due to diabetes, even if the symptoms are nothing to do with it.
How has understanding about your disability changed and what has the impact been on you?
The developments in both the medical treatments for diabetes, and the increase in society’s understanding of the condition have made a huge impact on my life.
In the 1990s, I would have to carry around a blood glucose testing meter, a pen to draw blood from my finger, needles to go in the pen, test strips to put the blood on to go into the meter, 2 vials of insulin, a pack of syringes, and biscuits and glucose tablets at all times. Today, I wear a glucose monitor on my arm and can access this via my phone. I carry one insulin pen around with the drugs pre-loaded. I still carry snacks and sugar at all times. But the insulin treatment today means I can eat whatever I like, even cake and ice cream, as long as I take insulin for it. This is a huge change from when I was a child when I had 2 insulin injections a day, I wasn’t allowed anything sweet, and I had a strict food regiment. I can still remember the exact amounts of carbohydrates I had to eat. My life was ruled by carbohydrates and eating times.
But today, there is much better understanding and representation. People no longer bring cake into the office and offer it to everyone except me, saying, “I know you’re not allowed it.” It was wonderful to see a character in Pixar’s “Turning Red” wearing diabetic technology as this helps to normalise it. And the fact that diabetes technology is now pocket sized, wearable, and discreet, means it is just one small part of my life, rather than the whole of my life.
How can people avoid making life harder for you/support you?
I find what I appreciate most is people not making assumptions about me, showing curiosity, and listening to what I know my body needs. The most welcoming thing people can do is ask, “is there anything I can do to help?” Not everyone who has a health condition, or even people who have the same health condition, will have the same needs. And offering, or requesting, reasonable adjustments is a way to start these conversations and build understanding. For instance:
- Not putting meetings in over lunch is helpful for me, so I can ensure I get food.
- Some people may prefer privacy when injecting, so making them aware of private spaces can be helpful.
- Showing understanding that I will snack before setting off on my bike helps me not to feel judged.
- An appreciation of what low blood sugar may look like really helps remove the anxiety around what to do if I have a hypo at work and cannot form coherent sentences until I’ve had a biscuit!
These sorts of small adjustments and considerations cost nothing, but they make an enormous difference and help me feel supported and included.
