As a sought-after teacher aide for children with severe spectrum disorders, my sister Katie was no stranger to disability. Having battled chronic Lyme disease as a young adult, she had first-hand experience with disabilities that helped her earn the trust of her students and the respect of her peers.
But nothing could have prepared her for the trials that would unfold when she suddenly became disabled again in 2015 — when she was nearly 7 months pregnant with her first child. Leaving work on a wintry evening, she slipped on ice in the parking lot and fell backwards on her head, sustaining a concussion that has led to a long-term disability.
Now a mother of two boys with a growing business as an at-home beauty consultant, Katie has learned to live with her disability, but her struggle still continues on many fronts. Here she shares her experience at the difficult intersection of disability and pregnancy, what makes her feel empowered as a disabled woman, and how non-disabled people can be supportive and accommodating allies.
– Meghan Feeks, Co-chair, DAUK Women’s Caucus
What kind of disability do you have and how does it affect you?
My disability is post concussion syndrome. This makes me feel slow to process information, and even sentences that are said to me. I often hear what is said in the beginning and end of a sentence, but it takes me a second to fill in the middle. My eyes don’t track as well as they used to. At my last eye exam, my ability to track left from right was less than 1%. My eyes are slow to adapt to changes in light, and I feel sick when I have too much visual stimulation. This makes driving and reading very difficult and I limit my screen time.
You were pregnant at the time you became disabled. Do you think this affected the diagnosis and management of your disability?
I was 27 weeks pregnant when I had my accident. The hospital was sure to monitor my baby and sent me up to the maternity ward, but I was never physically checked for a concussion until I showed very obvious symptoms in the days to follow. Being pregnant, I could not have a CAT scan and even an MRI was not advised, but it was eventually determined that the risk was worth determining if there was any brain bleed.
I could not be prescribed most pain management drugs that would normally be given to a concussion patient. Even so, the doctor that worker’s comp assigned to my case still offered me drugs that are not known to be safe during pregnancy, and are known to be unsafe during breastfeeding. I refused to take them to protect my child. I wish I had known what I do now: to advocate for therapies that could have helped me, without the risk of drugs.
You had to take time off work due to your injury. This coincided with when you had your baby. Did this create complications?
I had to use up all of the sick time I had saved for maternity leave, as the school where I was working does not offer any paid maternity leave whatsoever. The worker’s comp policy would only pay after all of my sick time was used up. Worker’s comp also argued that the time I was planning to take maternity leave should be unpaid, because it was time I would have been gone anyway. If I were a male, receiving worker’s comp with a new baby would never have been a problem.
Another complication arose when I got pregnant with my second child. While my case was still nowhere near settled, I felt the need to hide that I was pregnant. Like it would be held against me if they knew that I was expecting again. I didn’t want to be thought reckless or irresponsible. I feared they’d think, “If she can have another child, she can work.”
You were diagnosed with a longer-term disability around the time you had your first child. What was it like trying to manage your disability while adapting to motherhood?
Post concussion syndrome symptoms are often worse when a patient is sick or sleep deprived. New baby and sleep deprivation go hand-in-hand, so I was miserable. There were days that I had to put my crying baby on the bathroom floor just to know that he was safe while I threw up, or had to hold him close while I buried my face in a pillow in a dark room to cope with stabbing migraines.
I couldn’t drive, so depended on friends and family to bring us to my many doctor’s appointments, and I couldn’t make it to the new mothers’ group at the local family center until my son was 3 months old. After that, I still couldn’t make it regularly, and wouldn’t drive at all after dark. I was isolated, not only as a new mother, but as a head injury patient, and shunned by my previous coworkers. I felt like I had done something wrong. I was made to feel like I was taking advantage, or had somehow wimped out on everyone.
What solution was reached in your worker’s comp case? What assistance was made available to you, and how helpful/unhelpful has it been to you as a mother of two?
I was given a small lump sum to carry me over to the Advanced Disability Retirement (ADR) that I was told would come easily to me. More recently, I was notified that my case was dismissed, and any hope of ADR was gone, because I was not performing a duty of my job when I slipped on ice. I was going to my car at the end of the work day, not monitoring recess.
Instead, I was given 2 years since receiving my lump sum to take advantage of vocational relocation. This is a service that helps disabled people to find a job that would accommodate their new limitations, with a similar pay grade as their pre-injury job. I tried to take advantage of this, but it was already very close to my deadline by the time I learned about it, and the requirements were too great for me to be able to follow through. I didn’t have the money to schedule all of the medical appointments I needed for paperwork and transportation was too costly and complicated. I was also discouraged by the types of jobs the service had in mind for disabled people. The jobs I kept hearing about were computer jobs to do from home. Can you imagine a mother of two young children, trying to focus on a screen for 40 hours a week, with a head injury? “Work from home!” they said.
What would have made these programs more accessible and helpful to you ?
These programs would have been more accessible if there was a kind of coach or counselor to check in and see if I was taking advantage of services available to me. How can they expect a head injury patient to keep track of so many details, do so much paperwork, and afford all of the appointments that have never once been reimbursed? I use a lot of organizational strategies, but it’s too much to manage when even grocery shopping feels like a challenge.
Based on your experience, what’s the biggest misconception that people have about disability, and what’s the most important thing you think we should know?
People are fighting battles everyday. They are fighting their bodies and minds, trying to get them to do their bidding. They are fighting greedy lawyers and policies that doom a person to fail. People are broken, and writhing in pain, where no one can see. People are not milking the system, they are trying to find a way to exist in a system that is not eager to help. Disability doesn’t always come with a brace or a bandage. Disability doesn’t mean dull. Disability is not being able to do what we used to do, or what we want to do, in the way that we once pictured, or in the way that others might.
As a woman living with a disability, what helps you feel empowered?
What makes me feel empowered? My spirituality. I always have somewhere to turn. It’s being a part of something bigger, no matter the circumstance. It’s also having something within that I can hold dear — or share if I choose to.
Another thing that makes me feel empowered is when people come to me to help them with something I’m still good at. Need a meal? I got you. Need a costume? Need to primp? Need a lesson or a party planned? Need to talk about your kids troubling behavior? I can listen.
What’s the best thing that non-disabled people can do to be an ally to someone with your disability?
Find out what accommodations can be made for someone, so that they can carry on with the life. Don’t shut people out. Most of all, believe someone, when they tell you they need something.
For more tips on how to be a good ally to people living with disability, click here.