Last week, I promised to do a post on self-advocacy, so here it is.
One of my most frequent readers recently told me he and his spouse are looking at adoption and may end up adopting children with disabilities; therefore, he enjoys this blog because it gives advice on how to deal with issues unique to having a disability and being the loved one of a PWD. However, I recognize that not everyone who reads this blog understands the exact ins and outs of common issues. For example, self-advocacy may seem like a great idea, but how does one go about teaching it and achieving it? What exactly does IDEA say and how can loved ones of children and teens with disabilities be sure this law is followed? What is an IEP, really? We’re going to deal with some of these questions this year in what I’ll call “primer posts.” Our first topic, of course, is self-advocacy.
Q: What Is It?
A: In its simplest terms, I think of self-advocacy as R-E-S-P-E-C-T for self and others, within the context of a disability. (Aretha Franklin had a great point). In other words, self-advocacy means if you have a disability, you’re able to treat it as a natural part of life and preserve your dignity while living with it. You’re also able to express needs and wants, feelings and questions, in a way that shows respect to others. This is key because a lot of misguided idiots still believe PWDs are at their core selfish people, and that self-advocacy only encourages self-absorption. Neither of these things are true, but it’s an easy trap to fall into, especially as kids get older and learn that the world doesn’t revolve around them. So in addition to respect for self and others, self-advocacy also involves confidence–the confidence to say, “I have wants and needs, and I have the right to express those in a productive way. That does not mean I am self-absorbed or a bad person.”
Q: When Should It Be Learned?
A: The short answer? ASAP! The long answer is, self-advocacy is learned in pieces throughout life. The way a four-year-old with cerebral palsy self-advocates is not the same way a twelve- or sixteen-year-old will because they each have different vocabularies, understanding levels, and needs. Let’s break this down, shall we?
This may also be the age where kids start having conflicts with teachers or administrators over what their IEP says vs. what the school is willing to do, or his or her needs and wants vs. what the “experts” think is best. As a parent or guardian, your role is to be the advocate for things like IEPs. Stand up and say, “You told me Oliver would get extra time on tests because of his learning disability–why has this not been done?” If the school says, “But we’ve never done it this way,” don’t accept that as an excuse; find people who will work with you to provide what your child needs. If a therapist or other expert says, “Your child needs to be in special ed/the best she can hope for is group home placement/real jobs are not realistic,” then you have to be the advocate and push for better answers.
However, there are some ways in which a young child can self-advocate in these areas as well. Part of that involves telling you when a problem becomes too big. Teach your child what this means. It doesn’t mean, for example, tattling when the teacher says, “Elizabeth, let’s have you try tying your shoes today.” It also doesn’t mean refusing to do what therapists, doctors, or teachers ask if what they ask is reasonable and relevant. But it does mean speaking up. If, for example, a teacher says your child has to go to the resource room during a part of class he or she likes, it’s perfectly okay for the child to ask permission to stay. If the P.E. teacher is pushing your child to do something that doesn’t feel safe or that his or her body can’t do, it’s not only okay to speak up, it may be a safety issue.
-Explain disabilities in terms they can understand, in a fairly detailed manner, as is appropriate.
-Communicate their dreams and personal goals
-Talk about what “transition” means for them; where do they see themselves in five years?
-Delineate between what they do and don’t want
Teach your young adults how vital it is to speak up for themselves. Show empathy; IEP and other meetings can be intimidating. Reassure your young adult that you are still there as a facilitator and a resource, and that you and other experienced adults can and will help if things start to get confusing or overwhelming. Help your child sit down and discuss, with you and other trusted individuals, what his or her dreams are. With help from trusted experts, make actual plans to reach those goals, and make them measurable (i.e., “Be in an apartment within one year of graduation,” not just, “Be in an apartment.”)
Young adults often get overwhelmed and frustrated because at this stage, they’re often seeing the details of the ugly realities in Disability World. For example, they see that services are slow, waiting lists are long, and some “experts” just don’t care. They see years passing without much change, and fear takes over. Help head this off as much as you can, using strategies like the ones we discussed last week. Teach your young adult that it’s okay to be frustrated and to express that frustration. If needed, you and your young adult can write letters to service providers together; if the service providers won’t budge, go over their heads. For example, I’ve been through 4 Voc. Rehab counselors in 10 years, only one of which did anything worthwhile or saw me as a person. I’m considering writing my Congressman.
Q: What if My Child Can’t Communicate?
A: This is a valid point. Some PWDs have communication disorders, or their disabilities are so severe that self-advocacy may look very different from what I’ve outlined here. But DO NOT give up! Every PWD, without exception, needs some form of communication, whether that’s a picture board, sign language, a keyboard, whatever. Many people with severe disabilities may still need a secondary advocate like a parent or a trusted friend into their adult years. Provide them with that, but don’t project your own wants onto them. Truly be their voice, by expressing what they would want or need. If at all possible, let the PWD help decide who the advocate will be. For example, most of us love our parents, but we do need independence from them. Help your child find friends who can be advocates from a young age onward.
Self-advocacy seems simple, but it has a lot of nuances some people don’t know about. It’s also vital to make self-advocacy a real possibility for PWDs of any age and any level. So, go forth and advocate today!