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Where’s the Village?

Anger, rage, and the ongoing process of being shoved to the margins as a disabled person: it places the disabled in a position of being labeled as angry, and while some of the label might be justified, not all of our anger as a community is justified.

This past week I was given feedback (privately) that I have anger issues around disability. It has caused me to experience some sleepless nights, and to question how much of my own stuff I’ve worked through.

After sitting with the feedback, crying, and realizing that I don’t want to offend or put people off in such a manner that I would not gain support of the issues I’m passionate about, I decided that I do have some unresolved issues.

The issue around the anger is twofold. The first part of the anger stems from how society has misunderstood the disabled, underestimated us, and passed judgement on what we as individuals can and can’t do and what we need to make our lives work. This in itself is enough to cause riots, and the riots don’t happen. Why? Because we don’t have the energy to riot: we’re burned out. 

We’re burned out because we’ve reached out to different communities and we get put to the marginal space once again. It sounds like this: “Sure, we care about you as a disabled person, but ____ takes precedence. We’ll get back to you and address it.”  When someone uses “but” in this way, it feels like a negative. It feels like everything before the “but” just got washed out to sea. 

The Americans with Disabilities Act (ADA) solved some physical issues. Someone in a wheelchair can access an ATM/PIN machine. There are ramps, not always convenient to the wheelchair-bound person who needs easy access. There is still the battle with health care about what one needs or doesn’t need. I hope you’re getting the idea. I haven’t even touched on government issues. In the government arena, it is both good and bad. Oh, do I lump education in with government? It is society.

Then the other part of the issue arises, and this is an emotional killer: a disabled person can be ignored, discounted, not believed, ridiculed, or told that they look weird or act strangely. And, in 2023, the hardest insult of all is “Why were you born?”

Is it any wonder I’m royally pissed off around this issue? No. 

I realize that I can’t save or fix the world. I can only guide someone to a resolution of their issues. I can only do my personal work around my own issues, and sometimes that is a daily chore. So, in an effort to heal misperception, I’ll offer up some tips. 

Nature does what nature does and nobody is to blame but nature. Nature does its own thing during pregnancy and sometimes nature creates a person with a disability, an orphan disease, or a deformity that can’t be surgically corrected. It’s a part of life, and for the believer, God didn’t do this to your child or to you. You are not being punished. Life happens and each of us are the lucky souls that get to deal with what life deals to us each day. 

Sometimes injury happens. Injury can take many forms: a car accident, a sporting accident, a bad fall, a stroke, a fire, a natural disaster, a fight in which one person is injured. Even a person who is trying to protect themselves from danger can make a choice that creates disability. How a person arrives in the wheelchair, deformed, blind, deaf, or brain injured is the backstory that each disabled person must come to terms with.

A good definition for Traumatic Brain Injury (TBI) is a sudden injury that causes damage to the brain. It may happen when there is a blow, bump, or jolt to the head. This is a closed head injury. A TBI can also happen when an object penetrates the skull. This is a penetrating injury. Talk to a competent physical therapist and they’ll be able to tell of ways people get injured that I haven’t listed above. 

We each have a back story: What’s yours? Remember the kid you saw having the meltdown in the grocery store, and the parent just stood there, and you passed judgement? Not so fast! The meltdown may be due to something other than poor parenting. It might be that the child is overstimulated by the environment: too much noise, music, too many people, and not enough brain development to use words to disclose what is happening on the inside. A parent with a disabled child understands that during a meltdown might be the wrong time to swoop in and remove the child in distress from wherever they happen to be at the time of the meltdown. If the parent knows that they could be injured by the child, it’s a hard call. Are you thinking that the parent needs to leave their child home? The parent might not be able to afford the luxury of a qualified caretaker for the time it would take to run all the errands in the universe. This might be their only option. 

Once, while on a chat site, the issue of getting hired came up. The person wasn’t hired because the company want “that weird-looking person working as the receptionist”—a job that this person was qualified to work at. When companies hold this attitude towards the disabled, they drive the person to a place of unemployment. If a person with a degree can’t become employed, what do they do? If they try to get government assistance and are told that they fail to qualify for benefits because they are employable, what are they to do? If they make the effort to work with a job coach, and the job coach has little to no training in working with the disabled population, where does this person go for help? They wind up in chats, the crazy builds, the anger builds, and those who can are told they can’t. This is an issue! 

Money doesn’t grow on trees, and a government can’t finance all of it. True, and companies could do better as well. This issue is for another post. This is complex. None of us live in a utopia. Some of us are able to create a supportive village that can lend a hand. If it takes a village to raise a child, it takes the village reaching out the greater community to assist with those who are disabled in our society. I’ve only touched on a few key points here. 

The village is where it begins. Maybe someone in your village can begin by writing letters, making phone calls, and learning how to assist with the disabled child or adult. Offering to understand the backstory, the lack of resources, and the battle that a parent might be fighting between working and caretaking are all good steps to understanding the meltdown in the grocery store. 

Why do I have anger issues around disability? Because there are not enough caring villagers who will stand up and lend a hand. Please, become a caring village member and find out about someone you might enjoy knowing. 

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