Hugo Trevino: Maintaining independence during clinics

Hugo Trevino, who has SMA type 3, shares how he reinforces boundaries that guide medical professionals and caregivers to respect his dignity while in healthcare settings.

So this is something that has kind of slowly been developing with self-advocacy. I do have, sometimes, attendants that will go with me to my appointments or family members that help me as well. But I try to make sure to let them know, especially now that I’m an adult, to try not to answer any questions even though they might know the answer to it — you know, things like that.

Or recently, I’ll go into the doctor’s appointment on my own as well. I might take off a coat or jacket, you know, if I need help. But I try to rely more on the nurses to help me take off clothing as well.

If they’re going to, you know, just do vitals or any other thing and to help me put clothes back on, and my family member or my attendant can wait in the lobby. That way I try to make sure that the doctors respect me, that they talk directly to me, that they’re addressing questions to me because unfortunately I have had, in the past, where when I do see a new doctor or someone, they sometimes — because of ableism — will not talk directly to me sometimes, right?

And so this kind of guarantees that they engage with me as a patient and that I’m the only one that’s talking with the doctor and so I kind of make it or bottleneck it so that I am the only voice with the doctor. It’s just that one-on-one time.