I know that I have been horrible about posting every day, and I missed several days. I had a personal issue arise, and I have neglected my blog, as a result. Luckily, I’m back to finish off the month, with some blog posts about SMA, SMA Awareness and disability, in general.

Today, I want to talk about one of the most important issues we rarely discuss, not only in the SMA community, but in the greater disability community. That is…abuse. When we think of abuse, we often think of physical abuse. We think of children getting hit, beaten, kicked, or otherwise physically harmed. However, there are several other forms of abuse, including mental and emotional.

An empty wheelchair, sits on the edge of a cliff...looking out over the vista.

One of the types of abuse that I have heard is prevalent to people with disabilities, is a form of mental AND emotional abuse. It is the abuse of bargaining. I have found that many people with disabilities who endure this type of abuse are too ashamed to talk about it. I, myself, faced this type of abuse growing up, and I don’t often speak or write about it. For so long, I felt ashamed about it. I blamed myself for it. I thought that my abusers were right, and I deserved it.

I’m sure you’re asking yourself, what is the abuse of bargaining? It is more prevalent to people with disabilities, because a lot of us require help doing daily tasks of living. When you experience abuse of bargaining, your abuser uses the fact that you need help to do things, to manipulate you into doing things their way, on their time, and often with the intent of controlling you.

My parental unit was all about trying to control me. We often clashed, because I don’t like to be controlled. To this day, I have my own issues, where I must maintain certain levels of control over myself, because of the type of abuse I endured relating to control.

Sometimes, if they wanted me to do something, they would say that they would not take me to the bathroom or put me in bed, unless I followed their demands. The bed one was most prevalent, but the bathroom one happened quite often, as well. Imagine being told you could not use the toilet, unless you did what some other person wanted of you. While, I believe, when you have a family member caring for you, you should try to be reasonable, and meet them halfway (maybe only ask for a late night out every so often – not every night), if they never are willing to accommodate you, and use your disability to make you do what they say, that is abuse of power.

I’ll give you an example. My church, which was in the middle of my small town, had a yearly festival. I rarely, if ever, stayed out late. I went to the festival, and came home after midnight, with my older brother. I was 19, so it wasn’t like I was a little kid. When I wanted to get into bed, my parent was furious that I had stayed out late. This was the first time I ever stayed out that late. Usually, I was in the house before dark. When I stated my 21 year old brother had also been out, I was told, “It’s okay for him, because I am different. I’m not like him, so I cannot have the same rules.”

When you have a kid with a disability, you should never say that their able-bodied sibling is different, so they get to follow different rules. This is ableist! Having rules that discriminate your child with a disability, is just wrong. So many nights, I wanted to stay up and talk to friends, but I knew if I did, I’d be up all night, or wouldn’t be put to bed. I had to adhere to their schedule. Even though I was technically an adult, I had absolutely zero say in my life and in my schedule.

The correct thing to do would have been to sit down, and work out a schedule, where I could sometimes be accommodated, but also the person putting me to bed wouldn’t always have to wait around for me. Instead, I felt like I never had any control, over my life, and to this day, hate when someone tells me when I should go to bed or to sleep. The long-term effects of bargaining have led to OCD-style control issues and long-term insomnia. I’m working on these issues. This just reiterates, to me that people with disabilities, especially teenagers/young adults who are trying to come into their own, need some level of freedom and independence.

I think the worst is using something like eating or toileting, as bargaining chips. These are necessary bodily functions, and the caregiver should never bargain these things. I have heard many stories from friends with disabilities, where those caring for them have abused their power by bargaining these essential things. It’s disgusting, harmful, and hurtful. There are just some things you cannot bargain, but when you rely on others for care, you sometimes have little choice in the matter.

You should also never use mobility devices against a person with a disability. When I was in my late teens, I was as mouthy as any other teenager. Someone said up and I said down, just to be an asshole. However, sometimes, my punishment was to be pushed into my bedroom, with the back of my wheelchair turned off, so I could not move. This is not only dehumanizing, but it is disgusting. My own brother used to do this, at the request of our parent. You would NEVER chop off an able-bodied child’s legs, as punishment for bad behavior. However, for some parents, it seems perfectly acceptable to take away or turn off our mobility devices. I don’t care what a child or teenager does. THIS IS NEVER EVER OKAY. JUST DON’T DO IT!

Additionally, I was old enough to buy my own phone line, and computer. I would often take my phone to bed, and call up friends, who I would talk to, including my now girlfriend (of 12 years this November), Ashtyn. Ash’s mom used to call me “that person who whispers” because if I spoke at a normal tone, my family would know I had my phone and put it out of my reach, so I could not use it. This was my phone. My money. My property. It wasn’t theirs to take, but since I couldn’t get out of bed to stop them, they used my disability against me, to try and control me.

The abuse of bargaining is much more common than you think. It leads to long-term psychological problems, such as OCD and anxiety. As parents and caregivers, it is your responsibility to provide a safe and caring environment for your children, whether they have disabilities or not. Abusing a child’s disability just creates an atmosphere of fear and distrust, and it needs to stop. Find a way to have a dialogue with your teen, if you face these issues. Chances are, they are just as frustrated as you are.

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