When Roses was 3 months old, we received a visit. The individuals associated with our early childhood special education services came to help. Where we live the department of education provides these services. In our experience, this has allowed for smooth transitions through each part of the process.
At this meeting, they came to offer support and resources for our newly diagnosed DHH daughter. They told me she had a disability. I remember the denial I felt when I heard the word disabled used to describe her. I could only think of the stigma the children receiving special education services had at my school growing up. I was indignant at the moment. I told them they were wrong she wasn’t disabled, just hard of hearing. It was different. It had to be.
Disability sounds like such a dividing term. In some ways it is. It changes how we view a person. The things we do to communicate and accommodate, and even how we friend them. Some of these responses are helpful. But some are limiting and show our ignorance.
What is a disability?
The Americans with Disabilities Act defines a disability as “a person who has a physical or mental impairment that substantially limits one or more major life activity.” I didn’t think this described my daughter at all. I mean, we were assured by the doctors that with work and assistive technology she could be mainstreamed. A so-called normal child. There were no limits involved.
Digging deeper into the meaning of the word disability the ADA also says that this covers people who are regarded as having a disability. This means “has an impairment that doesn’t substantially limit a major life activity, has an impairment that substantially limits a major activity only as a result of the attitudes of others toward them, or does not have any impairment, but is treated by an entity as having an impairment.”
If the shoe fits…
Okay, I have to admit, this sounds a little more like Roses. People see her hearing loss as something that makes her different. Unable to do the same things they can. People don’t question this. She is disabled, therefore, she needs some extra help. She needs preferential seating, assistive technology, and occasional adjustments in the physical aspect of her education. We have encouraged our kids to advocate strongly for themselves. Move to the front of a room if you can’t hear a teacher. Ask people to speak up or repeat themselves if needed. For group projects, see if you can work in a quieter place than the classroom.
There are times though when they can’t or more likely won’t be accommodated. My worst example was from our old parochial school. Our religious leader refused to wear the FM system for our daughter during chapel. He felt that it was unnecessary and annoying. We didn’t make a big deal about it. I wish we had. but that is a story for another day. Instead, we took it as a chance for our daughter to learn that sometimes she will have to deal with people who aren’t willing to help or support her.
We all need to be advocates.
This is important for all of us. It doesn’t matter if you have a disability or not. We all have times when we want or need something to help us, and we may not be able to get it. Learning how to stand up for yourself whether vocally, physically, or even in an emotional way is an important skill. It is one that children with disabilities and children who are considered “normal” both need to have.
I feel blessed that as a parent I had the opportunity when my children were young to have supportive people surrounding me. They helped me to understand what accommodations my children might need and our rights. Most importantly how to make sure they are respected. I continue to work on this every year. Roses has the chance to attend and give input at her IEP meetings. I encourage her to ask for help and advice from her specialist. When she is uncomfortable doing that, I support her by giving her the voice she needs. I make her an active part of the solutions.
My child is not their disability.
There have been times when she gets frustrated. She says people blame any trouble she has in school or her social life on her hearing loss. It is my job to explain that she has to advocate when this happens. As someone with so-called normal hearing, I can only imagine how her hearing loss affects interactions. It is an easy crutch that I fall back on when things are not going well.
Often in an attempt to understand and give her what I think she needs, I forget to ask her what she thinks is happening. I believe this is the most important thing to remember as you are raising children with any form of disability. They need to be active in identifying problems and finding solutions. Only they know what it truly means to be disabled. No textbook definition or legal one can ever give me the full scope of what it is like to live with hearing loss or a neurodiverse diagnosis. This is why we must teach our children to advocate for themselves.
For more information about the Americans with Disabilities Act please visit them HERE