I have a teenage daughter who’s been in a wheelchair her entire life. She’s “partially ambulatory,” meaning that she can feel and move her legs, but she doesn’t have full extension in them, and cannot use them in a normal manner. In smaller, familiar spaces, such as at home, she walks on her knees using special “knees shoes” to protect her legs. But, everywhere else, she uses her wheelchair.
Everywhere we go people are always trying to “help” with the chair. Either they try to help her by pushing her (often without permission), or help me when lifting it into and out of vehicles, storage, etc.
Here’s the deal:
We understand that you’re only trying to be helpful. Yes, I know, you were raised that way, and your Daddy would lay you out if he saw you letting a woman or young lady do anything resembling heavy lifting or manual labor. Or, maybe you think it’s your duty, as an able bodied person, to assist her in whatever way you deem necessary. But, to us, as a family, other people touching my daughter’s wheelchair is the equivalent of other people touching my daughter.
Seriously. Just don’t do it.
1. It’s creepy. When my daughter is actually using her wheelchair it becomes an extension of her body. To her, you laying hands on that wheelchair feels a lot like you laying hands on her shoulders, or hips.... or just sticking your paw right up between her knees. If you try to push it from the back she will become very upset. If you try to pull it from the front don’t be surprised if you get hit, kicked, or bitten. Seriously, this has happened.
2. It’s condescending. All my daughter wants is to be treated like a normal person. Yes, there are times when you will need to take her physical limitations into account, but overall, my daughter wants to be treated like any other girl her age. You may see her struggling to open a door, but the overwhelming majority of the time she doesn’t want you to drop what you’re doing to open it for her and push her through. First of all, this emphasizes that she’s different. She doesn’t want to be different. If she needs your help she’ll ask for it. Her mouth, and the language centers in her brain work perfectly.
Second, and this goes back to the Creepy Factor, if you held the door open for someone else’s teenage daughter would you also put your hand on her back and push her through? And if you did, how do you think she and her parents would feel about that?
3. When she’s not in her wheelchair we all prefer that only a member of the immediate family handle her wheelchair. Again, this is an extension of her body. Only, at this point, the Creepy Factor is removed and replaced with the Respect Factor. Her wheelchair is actually more fragile than her legs are. It’s easier to break the chair than it would be to break her legs. And yet, people treat it as though it was as tough as cast iron.
No, you can’t just toss it into the back of the truck or leave it unsecured. No, you can’t force it to fit into a vehicle or closet if it doesn’t actually fit.
It’s an old Ultra Lightweight. It has metal parts, but it also has plastic parts, cloth parts, sponge parts, and parts that come off. It has parts that can crack, tear, or become damaged by liquids, heat, and cold. It’s not a big deal to you if the polymer spokes crack, but’s it’s everything to her. To her, and her mobility, it’s the same as breaking an ankle or knee is to you. Would you be so careless if her flesh legs came off and needed to be loaded into the vehicle?
We don’t expect you, who is not her mother, father, or sister, to view her chair this way as a matter of instinct. But, we do view it this way, which is why we all prefer that only a member of her immediate household handle her chair when she’s not it.
We’ve already had to replace parts on her wheelchair because some helpful people have handled it incorrectly. She’s on he 3rd set of wheels, 2nd set of arm rests (the number one reason she doesn’t use them anymore), and has had the ball bearing seats replaced more times than I can remember. She is currently awaiting a new set of foot rests...because the hinges and clips do actually break when you try to “make it fit” in the back of a minivan by slamming the door shut to force it in. She’s decided that her advanced project for Sewing Class is going to be wheelchair seat covers because they are always getting torn by people folding her chair incorrectly, or stained because they shove it out of the way and into things like dirty oil cans or by the over-full trash can.
4. The appropriateness or lack thereof, is something people never consider. She has two “besties.” And just because she doesn’t completely freak out when one of them turns her chair to face something they want to point out to her, doesn’t mean that she feels that way about everyone.
For one little girl to jostle another little girl in the course of playing is okay. For a grown man she isn’t even related to to do it is not okay.
If I, her mother, suddenly take control of her wheelchair in order to do something like take a shortcut up a curb, that does not mean it’s okay for you to do it. It’s the equivalent of grabbing her by the arm and forcing her in the direction you want her to go. It’s okay for me to do it. I’m her mother. I will physically redirect my able bodied children too. Though, even then, there is a limit to how much I can physically redirect her before it becomes abusive.
It is not okay for you to do this. Ever. If my 16yo able bodied daughter started walking up the handicap ramp instead of taking the stairs would you pick her up and carry her up the stairs? To us, it’s the same thing.
5. Personal space does not decrease just because someone is in a wheelchair. Seriously people. If anything, it increases. Her requirement for a wheelchair does not give you permission to get mittsy with her. Leaning in and around her when she’s trying to move, even if it’s to “help” her is what we call a Bad Idea. She requires more room to move than your do. Likewise, reaching over and grabbing her chair, putting your hand up against her body, to pull her over to a table is still putting your hand up against her body. I don’t know how many times people have done that and then gotten offended when she gets upset.
Of course she got upset. She was just touched inappropriately. If you ran your hand down my older daughter’s leg and tugged on it to get her to come closer to you chances are you’d get hit, or, at the very least, screamed at. And then you would meet her dad... who would be less than happy with you. So, don’t be surprised when her younger sister reacts to the that situation in the same way. Her personal space is no less than her older sister’s just because she happens to be in a wheelchair.
6. I don’t care about your ego. I’m tired of my daughter and I “tiptoeing” around other people’s egos because they want to feel good about themselves by “helping the poor little handicapped girl and her mother.” My daughter, her mobility, her body, and her sense of safety are far more important to me than your ego. If you try to help me or my daughter with her wheelchair, and we ask you to stop then stop. Right then, right there, just frackin stop. If you go beyond that and continue to try and “help” or “be a gentleman” then you are the one that’s in the wrong. And I will let you know it.
So, please, don’t touch my daughter’s wheelchair. Ever. I know you’re trying to be polite, and you honestly believe that you know what you’re doing. But, don’t be surprised if you spontaneously start to bleed or need bones reset if you lay hands on it.
To us, the entire family, laying hands on my teenage daughter’s wheelchair is the same as laying hands on my teenage daughter.
Just. Don’t. Do. It.
