Future Reflections Special Issue on Advocacy
by Carol Castellano
Reprinted from Getting Ready for College Begins in Third Grade: Working toward an Independent Future for Your Blind/VI Child, by Carol Castellano (Information Age Publishing, 2010).
From the Editor: For nearly three decades Carol Castellano has been a vocal supporter of the rights of blind/visually impaired children. She is a past president of the National Organization of Parents of Blind Children (NOPBC), serves as president of New Jersey Parents of Blind Children (NJPBC), and is the author of four books, including Making It Work and Getting Ready for College Begins in Third Grade. This article first appeared as Chapter Six of Getting Ready for College Begins in Third Grade.
Rounding out the set of skills your child will need for a successful launch into an independent future are self-advocacy skills. Self advocacy is the ability to speak for--and speak up for—yourself—effectively. The long-term goal is for our children to be able to take charge of their own lives and not to need or expect others to speak for or be responsible for them. The process leading to this goal begins in early childhood and continues over the years in age-appropriate steps. At first, parents do the advocating--we protect, support, advocate for, and when necessary, fight for our children. Then, little by little, the balance shifts as we teach and empower our children to advocate for themselves and insist that they receive opportunities for increasing independence. As we train our children to step forward, we ourselves learn to step back.
To be effective self-advocates, our children need to feel comfortable with all aspects and characteristics of themselves, including their blindness/visual impairment. One way to develop this comfort level in your child is to learn and use positive language about blindness/visual impairment and the abilities of blind/VI people. Seek out competent blind/VI individuals who can serve as mentors and role models for your child and read the stories of accomplished blind/VI people.
Unless you live in a large city, your child is probably the only blind/VI student in the school system, and there is a good chance that school personnel have not had experience with blindness/visual impairment. Parents can use this situation as an opportunity to teach high expectations and positive attitudes and language to others. Positive attitudes and language will ensure that your child sees him/herself as a whole and complete human being, not as a collection of deficits and needs, as sometimes is the view in the education and medical systems. Your child will be watching and listening. As your child hears you speaking these positive words, he or she will feel good about him/herself, both as a person and as a blind/VI person, and will begin to internalize the message: It's okay to be blind. Blindness is just one of many characteristics that make up who someone is. Blindness/visual impairment does not stop a person from achieving goals.
Most definitions of self advocacy focus on the person's understanding the disability, knowing his/her needs, and knowing how to request accommodations. Although these things are important, for a blind/VI person, the more critical focus is acquiring the skills to get the job done and effectively communicating to others how he or she will accomplish the task. Don't think in terms of having things done for the child or making things easier for him or her; instead, think about the child's knowing how to do things. In other words, don't think accommodations; think skills.
One of the foundations for developing competence is having many, many experiences with the people, places, and things in the world. As an active participant in the world, your child will learn how to interact with others, find out how things work, develop a store of knowledge comparable to that of sighted peers, and learn how to do things. As understanding and ability grow, your child will learn to make comparisons, make choices, and make decisions. All of this leads to the development of judgment, very important to self-advocacy skills and being able to care for oneself.
So many of the people your child will encounter in the world will make the automatic and immediate assumption that your child needs help. Your job is to make sure your child learns the alternative skills of blindness/visual impairment that will enable him/her to handle age-appropriate tasks, demonstrate that help is not needed, and earn the respect of those around him/her. Blind/VI children need the ability to accomplish the normal tasks of life in the normal amount of time. Be sure that your child learns all the alternative skills needed to complete schoolwork independently, travel in and around the school building and in your neighborhood independently, do his/her fair share of household chores, and otherwise complete all the tasks expected of a child his or her age. Expose him/her to the variety of tools and options that exist for getting any particular job done.
It is very common for parents of partially sighted children to feel relieved that their child "is not blind." Teachers might say the child is lucky that he/she "won't have to" learn Braille or "won't have to" use a cane. The child is encouraged to use his/her remaining vision for all tasks and is rewarded by making Mom and Dad happy when he/she is able to see. Perhaps the child even feels embarrassed or ashamed if he/she is unable to accomplish a task visually.
Typically, these children are not taught the alternative nonvisual skills and are expected to function entirely visually--that is, until their impaired vision is unable to manage the task. Then these children start receiving accommodation after accommodation--shortened assignments, recorded books, someone to take notes for them, someone to accompany them on class trips, someone to get them safely from class to class. If these children have internalized the idea that being able to see is good and pleasing to adults, but having difficulty seeing is bad and makes the adults feel sad, and if they feel embarrassed or self-conscious about not seeing well enough to keep up, then they will not be inclined to speak up for themselves when their vision alone is not efficient enough for the task at hand. Left without alternative skills to accomplish the task and without the advocacy skills to speak up, these children truly are helpless. Is this any preparation for an independent future?
Don't let this happen to your child! Make sure that instead of accommodations, he/she is given the opportunity to gain age-appropriate skills. Instead of assistance, make sure he/she is provided with the tools that lead to empowerment and independence. Then, instead of feeling frustrated or embarrassed, or seeing him/herself as in need of help or protection, your child could view him/herself as--and really be--a competent, equal participant in the world.
As your child gains experience and skill, he or she will also be building confidence and self-assurance. You can encourage the development of confidence through the atmosphere you create in your home.
Blind/VI children (and even adults) are vulnerable to the unasked for and often unwanted "assistance" of innumerable well-intentioned people who, without thinking to ask, will pull them, push them, move them, steer them, place them, decide for them, and on and on. People will always be "protecting" your child, automatically assuming that they--by virtue of having eyesight--know what the blind/VI person needs. If your child does not gain the ability to deal effectively with these situations when they occur, he/she will be kept from having a normal, self-directed life!
Most books on blindness/visual impairment or disability talk about the ability to speak up to tell others your needs. I believe that for blind/VI people, the speaking up is much more needed to protest what you DON'T NEED! Cultivate in your child the ability to speak up for him/herself when these situations occur. Empower him or her to say a polite but firm "no, thank you" to unwanted assistance, accommodations, or special treatment.
Remember that the ability to say a realistic "no, thank you" is predicated on the child's actually having the experience, judgment, and skills to handle the task him/herself.
Whether trying to arrange an accommodation, request assistance, or avoid unwanted help, your child needs the social interaction skills to make him/herself understood and to persuade others to do what he/she wants. Practice ways to ask for and refuse things that will be likely to result in the desired outcome.
As your child grows up, make sure the balance shifts so that he/she begins taking the responsibility of advocating for him/herself. Secure in your love and support, bolstered by your belief in him/her, skilled in decision-making and judgment, filled with confidence and the knowledge base, skills, and competence to back it up, and fortified by the belief that he/she deserves equal treatment, your child will be well on the way to become an effective self-advocate.