I have been legally blind with the same little bit of vision for more than forty years. For many of those years self-advocacy seemed a good idea, but distant! It was my students at the Carroll Center for the Blind who realized that speaking up for what you need is a vital skill after you lose sight. So for the next fifteen years I taught and learned the specialized self advocacy skills needed by people who can’t see.

Then I wrote a book about it: When You Can’t Believe Your Eyes, (check end of post,) a guide to taking back your life after vision loss. The book was published two years ago this week and has won two awards.

It was a labor of love! Back in 2004 I resolved to get expert advice into the hands of people new to sight impairment and people living with long-term blindness.

Self-advocacy means requesting, refusing and negotiating changes using speech in a more assertive way. You speak respectfully and expect no less in return. Emails and texts are part of self-advocacy but speech is still the major way to ask for adjustments.

It’s so hard at first when you absolutely don’t want to ask for assistance. But in time you recognize the new skills you have developed:  Better problem-solving and out-of-the-box thinking; much better listening; more courage; often more compassion. Then you know you have a lot to contribute to your family and community.

As our lives open up again, we can practice self-advocacy on transportation, at stores, businesses, and banks. Start practicing where people are paid to assist customers. Social events especially large ones can be difficult and distressing before you are ready.

In other kinds of deep loss people can hide their pain at a store or social event, but with vision loss it’s right out in the open, so people who see well often make remarks that hurt.

3 Steps To Becoming a good Self-Advocate

Step 1: At home work on getting back to managing everyday tasks, and talk to family about changes so the home works for you. As you do this you also have to grieve. It takes time to understand that you are going through a profound loss, and letting feelings of sadness, fear, depression and anger sweep over you. You will need lots of help with this while you talk your way through all these emotions. When you feel more like yourself again, you may be ready to move on. 

Step 2: Using assertive speech – firm, positive,and specific – Is a new skill, so it takes practice. Rehearse what to say as you would before making a toast or speech. Speaking into the void when you can’t see the other person takes courage! Practice a short phrase mentioning your vision loss. And a sentence that tells the medical staff or store clerk what assistance you need. try your phrases on family members or a friend on the phone, or best of all to a few other people who live with vision loss.

 Step 3: When you feel confident asking for assistance at the “courtesy desk” or from a bank teller, you can move on to preparing for larger social events and telling the lawyer’s office how you want to receive information, and much more.

Provisions of the Americans with Disabilities Act make sighted assistance at large stores, businesses, and restaurants much easier to arrange.At medical appointments the ADA requires doctor’s offices to provide “effective means of communication .”(Check end of post.)

Assertive Speech?

Speaking up or assertive speech is communicating what you want or how you feel in a “Direct, firm, positive and when necessary persistent way”, from Your Perfect Right, (check end of post)

Assertive means being reasonable and specific; specific is particularly important with vision loss. There’s a difference between being firm and persevering about your rights, and blaming the other person. Aggressive is forcing one’s needs or requirements on another person. Non-assertive or passive is masking or restraining your own needs and wishes. Both aggressive (angry) and non-assertive (passive) speech can be more of a problem when You have not been able to grieve.

Communicating without Speaking

People who see well are very sight-centered. They communicate non-verbally all the time especially before an encounter or conversation begins. Their eyes, faces and bodies communicate what they want and how they feel without speech. We the people who don’t see much can work on a good appearance and posture as well as clear firm speech, but the other non verbal signals that a person who sees may be communicating; eye contact, nodding, smiling, pointing, turning towards us or away, and a hundred facial expressions are mostly lost on us.

This is why we have to become self-advocates often speaking first at an encounter by saying who we are, or asking for what we need. It’s a skill. And with little or no sight it’s in a league almost by itself. But once you get the idea it can transform your life.

Resources:

When You Can’t Believe Your Eyes: Vision Loss and Personal Recovery(NLS dbc11619, also on Bookshare.)

 Your Perfect Right: Assertiveness and Equality in Your Life and Relationships by Robert Alberti and Michael Emmans (NLS db 90308, also on Amazon Kindle and Audible )

Americans with Disabilities Act 1990

“The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else.”

 ADA Information Department of Justice phone line

 800.514.0301

Mon Tu Wed and Fri, 9.30-12 noon and 3-5.30pm EST Thurs 2.30-5.30pm EST .

 Overview of the ADA VisionAware.