American Association of the Deaf-Blind

Imagine driving with no lines on the road or lights to tell you to stop or go. People who are deaf-blind can't see those lines or lights. They are reaching for empty space. They need a human contact. Someone who cares. Someone who can help them.

Stephanie Bretz
A Deaf-Blind Individual

by Stephanie Bretz

Having Usher' Syndrome type 2 means you often don't experience the reality of needing assistance from another human being until your vision get bad. You must accept that there are just some things you can't do alone. You must humble yourself to depend on other people to help you in this very fast paced world of ours.

I'm 53, married and have two grown children. I started losing my vision about 10 years ago.

I have been fortunate for years to have my husband transport me to work and appointments. He was what you call a “Mr. Mom.” He became the driver, and spokesman of the family. I was quite lucky to have had such a helping hand.

Now my husband is back in the work force where he is most needed to support our family. He can't always take time off work to help me. Now where do I turn?

My two daughters are both in college and busy with their own lives. They do help when they can. Is it fair that everyone must change their lives around for me?

I can't just take public transportation to the doctor's office. I need someone to walk me to the office, sign me in, talk to the doctor in case I miss something, lead me to the area to draw blood, help me pay my bill, and fill out paperwork. See how much other people take for granted? Those of us who are deaf-blind need to have someone with us to get the ball rolling.

It's not fun trying to walk around out there in this world. It's not fun trying to hear or understand others when time is crucial, like at many types of office visits.

It's not fair to us to actually not want to go out for a check up, to visit a sick family member or friends, and so forth because it causes a lot of stress.

Imagine driving with no lines on the road or lights to tell you to stop or go. People who are deaf-blind can't see those lines or lights. They are reaching for empty space. They need a human contact. Someone who cares. Someone who can help them.

We are all alone in this cocoon body of ours. If we walk out the door by ourselves and take a wrong turn, we could get hit by a car. If we get lost, it can take us forever to find our destination. In this world of fear, most people will turn away, afraid we might rob them.

SSPs (Service Support Providers) are needed to help us with travel and communication. They help us get the medical care we need, enjoy a moment of shopping, or going to a deaf-blind conference.

I am not good at traveling by myself. I have had mobility training, but I recognize the dangers of not being able to hear or see while traveling bye myself.

We don't deserve to reach out to empty space. No lines on the road and no lights to guide us. No human contact. We deserve an SSP to guide us and get us through life's expiries. We need SSPs in order to improve the quality of our lives.

Let's fill the empty spaces with caring and helping individuals.

Let us become butterflies with the help of SSPs.

Let us fly....

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