Sunday, July 22, 2007

Little Dreamers Need Big Role Models

I was a teenager in the 1960s; it was a time of great solidarity for women. We encouraged one another not to accept the limiting roles that society had for us. We wanted to expand our roles and be considered equal with men. We wanted respect for our contributions to society. We wanted to be the athletes, not just cheerleaders.

Naturally after I had children, I wanted them to have the good strong women role models I didn’t have as a child. As a youngster I knew very few women who could take care of themselves; my daughters would be different.

I was a one woman rah-rah band who wanted them to believe they had what it takes to do just about anything. (For them I would be the cheerleader.) They saw a woman pediatrician; My OB/GYN and general practitioner were women. We went to a female accountant and dentist. We read Maya Angelou’s poems; Alice Walker’s, The Color Purple and watched Billie Jean King on television. I talked about Eleanor Roosevelt, Elizabeth Katy Stanton, Margaret Sanger, Sojourner Truth and other women of distinction.

One particular moment stands out when I think back on those days. I was watching a movie with my girls. One scene was of a woman getting the better part of a man in a Kung Fu fight. My youngest daughter turned to me and said, “I love it when women do that!”

Yeah, I thought. They are getting it.

I am not only the mother of daughters; I am the mother of a child with disabilities. I didn’t want gender or disability to limit her dreams. "If you want to be a [insert childhood dream], I think you can do it”, became my mantra. “Be a fire fighter? That’s very cool. I think you can be anything you want to be.”

This attitude, however, made (and probably still makes) special educators nervous. I received frequent lectures about aiming too high. They said things like, "Unreal expectations about your child’s potential are harmful to her." "Get your head out of the clouds and come back down to the real world. Get some real expectations."

Dream Big for Children with Disabilities

Parents of children with disabilities get this all the time. Fortunately, I found the antidote. Feel free to use it any time. When educators or, unfortunately, some family members, said something like that to me, I took a deep breath, pointed at my husband, and said:

When he was growing up his parents were sure that he would become the president of the United States, or a famed neurosurgeon, or some equally prestigious profession. No one… not one educator said to them, “I think you’re aiming a little too high, there’s no way this kid is going to be anywhere close to that.” No, they just smiled. My in-laws changed their lofty dreams when they saw him excel as a tall crane operator. They didn’t see it as a parental failure, or that their child had somehow failed. They saw it as a beloved child growing up and taking his own road to adulthood. I will do exactly the same thing with ALL my children.

Get it? Good, let’s move on!


I just knew my attempts to instill that “I am woman hear me roar” attitude would mean my children would have the advantages I never had. However, prevailing thought and societal stereotyping of people with disabilities is so embedded into the fabric of American life, that my beautiful young daughter began to think herself as flawed and her life, limited.

Creating Change
I joined the Decatur Chapter of the Coalition of Citizens with Disabilities in Illinois in the late 80s. I wanted to be more involved in the disability civil rights movement and I wanted my daughter to have adult role models with disabilities. She already had a few… a school counselor, an engineer who went to our church and sang in the choir. They were good, but she needed more. I thought she needed to see more successful women with disabilities, married people with disabilities, parents who had disabilities, boy/girlfriends with disabilities, etc. The chapter was just full of people like that.

There was one small snag… my daughter absolutely refused to go with me to the meetings or any other activity the chapter organized. I would come home from a meeting all fired-up; she didn’t want to hear it. I would take home and hand her literature; she threw it in the trash. I would invite her to go; she made life hell.

After several years of battle, and with no other resources in my arsenal, I evoked the often-hated, but hard to argue with “because I said so” parental clause. It was December and the chapter was having its annual holiday dinner at a cafeteria in the mall. After dinner Jim deJong, CCDI’s executive director at the time, would speak. She was coming to the dinner with me and that was that. As a positive reinforcement, I would let her go shopping for gifts in the mall after dinner.

In retaliation for making her go, my daughter based all her food choices on, “what’s the most expensive [meat, salad, vegetable, dessert] here?” It was a dagger into the heart to every single mother without disposable income.

Once through the line, she picked the table farthest away from her dear old mom. Despite it all, dinner was a pleasant experience. From my vantage point, with the aid of opera glasses, I could see the dark cloud of preteenitis lift once she started talking to people. The program started while we were still eating dinner.

People either loved or hated Jim deJong; almost no one felt neutral about him. I was squarely in the “love him” camp. Besides being easy on the eyes, he was a strong advocate for people with disabilities and a dynamic speaker. His speech was motivating, had a lot of humor, and a little lengthy.

After my daughter finished her five-star meal, I signed to her, “Ok, you can go shopping now. 1( see end note)

I got "the look". It's a special look that only hormonal preteens have for their mothers. She signed back, "IN - A - MINUTE!"

Jim was talking about his vision of disability advocacy in Illinois. I got caught up in it and totally forgot about my daughter. When I remembered I was still a parent I turned to look for her. Surprisingly, she was still sitting there.

I again gave her the chance to go; again she blew me off. After that lovely exchange, she stopped making eye contact and stayed for the entire event.

From the moment her butt hit the car seat, she started talking.

Thatwassocool!Imeandidyouhearhim?hesaidwecandoanythingwewant!hesaidth
atpeoplewithdisabilitiestogethercouldbeastrongforceintheworld.hesaidthatIshould
jointhecoalitionbymselfandnotbeonmymothersmembership.hesaidishouldgotocoll
ege.whatshouldibe?ohitdoesn’tmatterrightnowicanbeanythingiwanttobe.hesaidiw
ouldlikethecoalition.itscool.hesaidishouldstartateenchapter.andi’mgoingtojoinand
havemyownmembershipandgotomeetingswithmynewfriends.hesaidhewouldhelp
mewiththat.hesaid…andhesaid…andhesaid

She was unstoppable as we drove home. She was still going strong when we pulled into the garage. She seemed to catch a second wind as we walked in the back door of the house. Turning the light out next to my bed didn’t seem to slow her down. When I woke the next morning, she was still talking.

My reaction: what-a-snot! I kid you not, I was truly offended. I had spent part of everyday of her life telling her all he said and more. What was I, chopped liver? Emotions are rarely rational.

I worked just two doors down from CCDI’s state office in Springfield. So, in the funkiest of funks, I walked into Jim’s office and plunked myself down in a chair. I poured out my heart to him; gave him every sad morbid detail of my tale of woe. About my rah-rah band and all the work I put into parenting. It was the investment of my life. I was crushed. She didn’t believe me… she probably never believed me. Woe is me.

The pity party went on for a good while. When it was over Jim smiled and said, “She can’t hear you say that stuff, because you do not have a disability. 2 You’re her mom. That’s your job to say those things. You have to say that to her. You’re not trustworthy on this disability stuff. I am. She is like me. I am an older version of her. She sees her future through me, not you. It doesn't mean you're not a good mom. You get this, don’t you?”

And, of course I did, even though I did not want to admit it. Men cannot know what it is like to be a woman. A Caucasian cannot know what it is like to be African American. Native Americans should decide if Chief Illiniwek is a racist symbol, not whites.

And that is exactly the reason it is important for children with disabilities to see adults with disabilities. Most people with disabilities are raised by able-bodied parents. I would not have it any other way... a child should be with his/her parents. But, it can be isolating, unless we make sure they have the opportunity to meet adults with disabilities.

I also believe that ALL children, disabled or not, need to see adults with disabilities in positions of power, as members of families, as part of a larger community and world.

As adults with disabilities we need to make ourselves visible to all children. So, get out into the community and volunteer. Don't just volunteer for disability related causes; let the non-disabled world see your talents too.

Without those influences how will children without disabilities know that people with disabilities can be good bosses, employees, friends and spouses? How will they begin to understand that all people should enjoy access to their community or adequate housing, or a way to get into a local tavern to enjoy a drink or six with friends?

And, without those influences, how will children with disabilities get the idea that they too can be big dreamers?

______________

1. She did not speak intelligibly until she was eight years old, after five intensive years of speech therapy. So rather than English, American Sign Language became her first language.

2. Years later I acquired a disability and my perspective changed. I began to better understand that as much as non-disabled people want to think they understand, it is empathy (not that that is a bad thing), not their reality. There were things my daughter went through that I just did not fully understand, until I went through them myself.

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