10–07–2020 Interview Synthesis

Interview 1:

Justin Salisbury
10/07/2020
11am — 12pm

Introduction:

Still have some residual vision. Born fully sighted, but from a complications of head injuries — optic neuropathy — deterioration of optic nerves from the pressure that cut off oxygen. Vision has been stable since Spring of 2005. Half life full vision life, half life blind life.

Walk me through the day when you first visited the doctor.

Brain swelling — I had gone through a period of about two weeks of horrible headaches, and not being able to do much for a while. Out of school. Go into eye doctors and testing done. Could not even see light through one of his eyes. Following others (vision was blurry) to walk around. Gait had changed, motor controls had changed, ability to smile(even still) “I can only smile on one side”(other side is paralyzed). One side of the nerves were pretty much dead. A lot of testing. Hydrocephalus. The same eye doctor gave instructions to do scans… MRI… Referred to emergency neuro-surgery. Went to hospital a day early for a brain surgery. Had to learn to walk, go to bathroom, all over again. Right after the brain surgery he could see. Went to sleep but woke up next day blind again. People were still unsure what he was capable of with his residual vision. Doctor put a belt around the waist to help navigate; not sure what he could see or not. Not a lot of control or autonomy.

Were you accompanied by anyone?

-Accompanied by parents, when young.

-When I’m getting transportation by someone. Today, I’m usually going there by myself.

How much did you rely on them?

I relied on them on lot of things. If you don’t have the skills that a blind person has, then you don’t have a way of doing those things. You have to learn them. It is not like being a baby again… Going blind doesn’t take away all your knowledge. It’s the matter of learning new ways of doing them. When it comes to filling out forms… We cannot fill out paper forms.

In my case, I had to ask the nurse to help fill out the forms, but they aren’t always willing. They can sometimes be “resentful” (in the context of culture in Hawaii).

What is the most frustrating about visiting a medical care center?

Accessing the information is the greatest frustration. They have all the charts and info.. But you cannot see them.

Theoretically, eye doctors should be the most accessible… BUT in terms of them actually non-visually accessible, it’s very uncommon. Medical professions can be completely disconnected from them.

Culturally seems to perpetuate the idea that blindness = failure, to see = success.

In Massachusetts — if any eye doctor finds someone who is blind, they must report within 30-days to the Commission.

Did you ever self-administer treatments?

Vision therapy… Needed help setting it up on the computer, but most of it can be done independently. Stretching muscles, etc.

Your company. How did they affect your experience?

I was really interacting directly with the doctors.

How do you prepare before visiting a new medical facility? What do you look for first? What concerns you most?

I think about transportation. How will I get there? I want to know that it’s somewhere easily accessible.

I also try to crowdsource (community & reference check) to make sure that the doctor is an honest practitioner. It’s good to know that they are reliable.

I end up going without accompany. I’m starting to question if I should have someone to come with me.

Why haven’t you gotten someone to accompany you?

I think some of it is the process of being comfortable with hiring someone.

In the context of visiting a medical facility:
When adjusting to being blind, what is something that differentiates people who are able to quickly adjust to the new circumstances, and who aren’t?

Positive experiences & ideas before going blind can make a big difference. i.e. if it’s hereditary and have seen successful people before… Vice versa. Emotional predisposition can be very important. Access to blind role models can make a lot of difference.

Have you experienced anxiety and fear when first diagnosed/ Did this hinder communication between you and the doctor?

I guess I did. What will happen to my identity? (Dream was to go to Coast Guard academy.) I was constantly worried about losing that identity. Would I be good enough for anyone again?

I clung on to what the doctors said… As they were the hope of returning vision

People need to know that they will be okay to be blind. You can still live good life, good jobs, and everything.

What type of assistive devices do you use most often?

- iPhone — a lot of built-in accessibility. Apps like [KNFB Reader], [Seeing AI] Character recognition. Hover over words and reads it back to you.

- Computer — JAWS, Refreshable braille display, voiceover,

- Perkins brailler, (typing braille)

-Cane for walking. 69" fiberglass white cane.

How did you know about them?

- Talking to other blind people and learning how to use those devices.

- Some came from training centers for the blind.

Louisiana Center for the Blind.

- Being part of the NFB to connect.

• Education practitioner. Seldom comes from eye doctors.

Anything to add?

In a lot of disability cases. There is a general desire by the disability sub communities to connect the services and supports that will empower them to the medical arena. The blind community eventually pushed to migrate its service delivery model out from health care setting more to education setting. Because if we need these assistive devices, we don’t go through health insurance companies to get them. We want them to come through education agencies. Once your health condition exist and you are blind, we wanted to be treated as not a medical issue, but a minority group issue. It is an issue with the society and culture. Emotionally you have to be able to leave behind the pain of vision loss. You can become a great engineer, laywer, doctor…