Finding My Feet

Advocating for yourself is one of the most important — and often one of the hardest — skills I’ve had to learn since my diagnosis with cerebellar ataxia. I know how difficult it can be to speak up for your own needs, especially when your speech is slurred from dysarthria, your energy is drained, or you’re simply overwhelmed by everything you’re facing. But the truth I keep coming back to is this: you must do it. Even if that means getting a little creative, even if your voice shakes, and even if it feels uncomfortable.

Here are some of the practical ways I’ve learned to advocate for myself over the years:

• Before every doctor’s appointment, I prepare a detailed list of questions. I print two copies — one for me and one for the doctor. This simple habit helps me stay focused and ensures I don’t leave the appointment regretting that I forgot to ask something important.

• For difficult phone calls — whether it’s with insurance companies, medical offices, or support services — I often write a short script ahead of time. It helps me stay clear and calm despite my dysarthria.

• When I’m advocating for someone else in my “tribe” (a friend or family member with a disability), I remind myself to slow down and be patient. I let them speak at their own pace. They are doing their best, and my role is to listen carefully and support them without frustration.

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