PRC Ambassadors are real people who share their stories of everyday life as a person using AAC.
Posted August 8, 2018 in Communicators in Action
By Chelsea Hagen, PRC Blogger
I have wanted to write about parents that are overly protective of their disabled children, and why, WE the children, let them get away with it. I’m not sure I have the answer, but here is my funny story anyway.
When I was eighteen I asked my overly protective mother if I could read the Fifty Shades of Grey book.
A few of my friends had already read the book and said that Fifty Shades of Grey was the most interesting but also the most dirty book in the whole world. Of course, I was desperate to read the naughty book, I didn’t want to be left out. I heard so many things that were popping out all over everywhere about Fifty Shades of something… even a cook book called Fifty Shades of Chicken. People were laughing about it, but I had no clue what was so funny. So, I asked my mom to let me read it and she said in a sick sounding voice, “Nooo, it’s too embarrassing to let you read it.”
She didn’t want me to get confused about what a real relationship was. She didn’t think I could handle it. When the movie came out I watched it, then everybody said that the book was so much better than the movie. Again a friend said that I should read the books. I don’t really know what changed in me from the age eighteen to twenty-one, maybe I became more mature, and with all my reading I became more confident. But when I turned twenty-one I had to put my foot down and in my tough voice, well… my computer voice, I said to my mom, “I am twenty-one years old now and I want to read the book.” So, she didn’t have any choice. She said, “Just know that if a redneck did this to a woman, everybody would hate him and he would probably go to jail in a split second.” She said, “Remember that this is not a real relationship.”
I replied, “Come on mom, I read the classic book Lolita, now that was disturbing. So… I think I can handle it.”
I really think our parents believe that we are China dolls and they have to protect us from the big bad world. Just because we have a disability and maybe haven’t had a real boyfriend does not mean we can’t understand sex, or know a good relationship from a bad one. So, I started to read the book and OMG, it is naughty. Did I end up fifty shades smarter?? Not really. What I did think… it was weird how she wanted to be controlled.
People with disabilities are always getting controlled and that is not what we want. We are always trying to prove we can think for ourselves and make our own decisions. Another thing, being tied down sucks, I know this from experience. I am held down and told that I need to be perfectly still when I get an x-ray or getting a blood test. Also, when I was younger, my physical therapist thought that the only way to stop my insane movements was to strap my white spaghetti limps down. I had to tell them that I didn’t want to be tied, I like the freedom of movement. Now, after reading the book I thought maybe… I have been looking at this controlling, tying down thing, all wrong. Maybe… I should be looking at it in a more pleasurably way.
Then I immediately thought, Nah, no way, I don’t think I’m an Anastasia and all of my doctors sure the heck are not no Christian Grey.
So maybe fighting with my mom over reading Fifty Shades of Grey wasn’t my greatest display of independence. The coolest thing… it was still my decision. I think my mom learned that I survived reading the book and has extended the reins a bit. So, parents be less protective and more supportive and trust your disabled child to make some decision on their own. We just might surprise you.
On August 8, 2018, Guest said:
Well said Chelsea! There are (at least) two really important messages here. First, ALL parents, ALL parents need to accept that their children have the rights - even ones as seemingly simple as reading what one wishes. The other that resonated for me is your story of being tied/held down. You told me that before, and I have read of others who remember the terror and frustration of that experience. I probably was a participant in such acts at some point. Putting weights on kids arms, making sure that all the straps were tight. We thought we were helping, but were we LISTENING, I think not. I have learned so much from you my young friend. So happy to continue to learn. And, yes there may well be another research project that springs forth from this post. We shall see ;-)