When I decided to write an article on advocacy, I wondered if I should write from a personal perspective as a person with low vision or from a professional perspective, someone who has worked in the field as a teacher of visually impaired children and a university faculty member for over twenty years.
I realized both were important and so on my bike ride this morning I gave some serious thought to "advocacy" from both perspectives. I also thought about advocacy from both the perspective of a parent and that of a child with visual impairment.
For me to talk about advocacy, I first need to introduce myself and Esther, that's my mom, who by the way has been married to Herby for fifty years. In their generation the mom did the childrearing and the dad earned the money, so though Herby was a good dad he left all the vision and education stuff to Esther.
I was born in 1964 with cataracts (cloudy lenses) and nystagmus (involuntary jerky movements of the eyes) as a result of exposure to rubella during Esther's first trimester of pregnancy. Today my distance visual acuity is about 20/100 in my left eye and 20/400 in my right eye. I ride my bike about 3,500 miles a year, am married, have traveled to forty-nine states and three Canadian provinces, prepare teachers of visually impaired children at the University of Arizona and also contracted with the American Foundation for the Blind to assist in the development of the FamilyConnect site. I have a very full personal and professional life.
When I went through most of my K-12 schooling there were no IEPs or laws to provide for a child's special education. Esther took matters into her own hands and advocated throughout my education to make sure I had access to the same curriculum as my classmates. Probably my favorite story in this regard was when I was in 4th grade.
Back then we had purple dittos (poor contrast for any kid) and Esther insisted that the school provide me a Xerox copy (after all she had been president of the PTA for three years so they could raise money for a Xerox machine as she thought it would help me.). The 4th grade teacher would routinely forget to make a Xerox copy and I'd have to trudge to the office to ask the secretary for one. By the time I'd get back to my desk some 4th grader would have put a purple ditto on it. I would be so mad at my mom that I'd do the work on the purple ditto and then copy it onto the Xerox copy. One day she saw me doing this and questioned the teacher who gently told her that I was asserting my independence as a ten year old who very much didn't want to be different from all the other ten year olds.
That day was a turning point for both Esther and I as she came to realize she needed to let me figure things out for myself and that she needed to follow my lead when it came to advocacy.
With my personal life and my professional work, I have had a variety of experiences when it comes to advocacy, both helping families advocate for their children and helping children and young adults learn to advocate for themselves. I will share a few key points and stories with you here:
- Team work works! Right now we're in the midst of a major kitchen remodel and my husband is the quarterback for sure when it comes to our remodeling team. I'm a good cheerleader and water girl, but when it's time for patching drywall, ripping out floors, and running electrical I'm lost.
- Build bridges, don't burn them: You aren't going to be able to meet every educational need of your child, so you're going to need to identify the different strengths of potential team members and pull them together to support your child. The saying "it takes a village to raise a child," really has merit when we're talking about visually impaired children. Your attitude, commitment, organization, and follow through with different team members is going to be very influential in the way they support you and your child.
- Listen and respect other's opinions and ask them to do the same: I'm a pretty strong-willed person and I have a good knack for saying what's on my mind, often not in the most appropriate way. Recognizing this I have to work extra hard to make sure I listen to what others have to say and to consider their opinions and wishes, even if I don't always think they are "right." I've come to realize that life is a lot of compromising and there usually isn't a "right" and "wrong." Years ago I had a three year old student whose mother was eighteen years old, had dropped out of school, and had few resources when it came to raising a very multiply handicapped child who was blind. I invited her in to talk with me prior to his IEP meeting. Knowing that sitting in a room with eight "professionals" would overwhelm her, I thought we could work together to identify some goals for her son. I had my personal goals in mind: sitting in morning circle without screaming, trying new foods without throwing his body on the floor, using a communication device to make a request and so on. His mom had one goal: for him to ride a tricycle so he could go out in the yard with his four year old cousin and they could ride together.
I listened to this mom and made sure we put that goal on the IEP (though several other team members didn't want it on). For four months I worked with this child every day at recess to slowly introduce him to riding a tricycle. Shortly before Christmas a teacher came up to me and said she and some other teachers had watched his slow progress over four months and were pleased to see he would now let me pull him all around the playground on a trike and sometimes he would even pedal and hold the handle bars laughing and smiling. She asked if he had a trike at home and I said mom had one on lay-away for him. The next day the teacher was back with money several of the teachers had donated to buy the trike for him. The joy on this mother's face when I invited her to come watch him at recess and then handed her the money for the trike was one of my most special moments in teaching preschool children. I had listened and respected this mother's wish and I hoped that by doing so I had empowered her to continue to advocate for her son when it came to talking to "professionals."
- Problem solving and advocacy go hand-in-hand: During my doctoral program I signed up for a statistic course. I advocated for myself by contacting the professor ahead of time, explaining that I often could not see the board for sustained periods of time if I had to take notes, and asked if I might be able to obtain copies of her notes before class. She informed me she couldn't do that as she didn't know what she would write up there until she wrote it. I thanked her and moved onto Plan B: getting a classmate to share notes with me. The professor passed out print outs of data sets at the start of class in six point font (tiny, tiny) and I'd sit there with my magnifier struggling to see them. I'd have my monocular (a small telescope, similar to a pair of binoculars) out to try and see the board and would be going back and forth between the two frantically. The second week the professor walked in and without saying a word to me sat a stack of data down on my desk. The data was in fourteen point font and was the print outs for the rest of the semester's examples. I firmly believe this professor "came around" because I demonstrated that I was going to stick with the course and solve my problem of access with or without her help. As a parent it is important to help your child learn to look at situations from multiple perspectives and to develop a "Plan B" for when things don't go ideally.
- Start Early: Recently I was taking some photos of children and spent time with an engaging kindergartner who was blind due to rod cone dystrophy. At age six this child had already developed strong advocacy and negotiation skills. He let people know what he needed and why, he was polite, he looked in the direction of the person he was speaking with, and he knew to say "please" and "thank you." Social skills and advocacy go together. Both you and your child are going to be more effective in advocating for her needs if you have well-developed social skills.
As a parent of a child with a visual impairment you're inevitably going to need to advocate and to teach your child to advocate too. Herby and Esther always thought I would go to college in the backyard where they could keep an eye on me. When I left for a college 1200 miles away for the start of my freshman year, I had to learn a lot about advocating for myself because no one there knew or had heard of Esther.
In retrospect I wish my mother had given me more opportunities to advocate for myself as a child, because I had a lot of catching up to do as a freshman in college.
Regardless of your child's current age start thinking about ways she can advocate for herself from asking the scout leader if she can move up closer to see a demonstration, to asking a friend to be her sighted guide at the park, to making a handout for her new teacher explaining the different equipment she uses at school. In my opinion one of the most important things you can do for your child with a visual impairment is to teach her to advocate and problem solve so that she'll move into adulthood capable of letting others know what she needs.