- Monica Pickard spent twenty years of her adult life as a child care provider. During that time, with the help of her husband, she raised her son who has been diagnosed with Autism and Developmental Delay. She learned to navigate a world that was new to her – the world of Special Needs. She now shares these experiences and the wisdom they taught her, with love and heartfelt compassion for the human condition.
Wednesday, January 10, 2018
There are all kinds of people in this world. Everyone is born with the same rights, but some people’s rights are taken away from them because they cannot make good choices and decisions. It’s just the way things are and we cannot change it. I remember when I first learned I would have to go to court one day and have Joshua’s rights taken away from him. I did not want to believe it. It was horrifying to think about. At that time, I was still in denial about his future lack of abilities, but that was only part of my horror. It felt like doing that to him would kill the dream of his future; like giving up. It felt like all the possibilities would just fade into a puff of smoke and float away. My guardianship of him is for this protection and, in reality, it takes nothing away from him that was not already taken by disability, but hearing about it felt that way at first.
It is frustrating, though, to see people squandering their abilities. We take so much for granted. There are things some people would love to have, do, and/or experience, that others do not think twice about in their daily lives. Some things we think about occasionally, like our senses. We ponder what it would be like to lose one of our senses. We imagine what life would be like if we could not see or hear. We think about everything we would miss being able to see or hear.
What if seeing or hearing hurt? There are people on this earth who see, hear, feel, smell, and/ or taste too well. Their senses overwhelm them. Imagine too much of a good thing. If your senses are just right, be grateful. Don’t take that for granted.
Disability takes our choices away. Every aspect of Joshua’s life – because of the extent of his disability – is out of his control. Imagine that. It horrifies me to think about not having any control of my life at all. The things I decide for myself are precious. I would not give these things a second thought if I did not have to decide these things for my son.
Food – What to eat, when to eat, where to eat, if I eat. People with disabilities have been starved by others who are supposed to be caring for them just so they can get their disability checks.
Sleep – When to get ready for bed, what I wear to bed, where I sleep, who I sleep with.
Bathing – When to bathe, shower or bath, what soap I use, shampoo, conditioner, how hot the water is, how long I stay in there, my privacy.
Hair – What style, what color, when to get it cut, where to get it cut.
Clothes – What clothes to wear each day, when to shop for clothes, what to purchase, how much to spend on clothes.
Spending – What to spend my money on, where to spend it, how much to spend, how much to save.
Job – To have a job or not, what job to do. People with disabilities are limited in their job choices, often having to work at below minimum wage jobs in workshops because business refuse to hire them. This seems an awful lot like slavery to me. But still, they are happy to have even this. It beats sitting at home doing nothing. That is actually part of the problem. People know they would rather work for low wages than do nothing at all. Able-bodied people make the choice to take advantage of them.
Free time – What to do with my time, who to spend time with, what type of entertainment to choose, what activities to choose.
Living arrangements – State and city, house or apartment, who to live with, how hot or cold it should be in my house.
Do I go to the doctor and the dentist? If so, who do I go to and how often?
Voting – Do I vote? For whom? I only have this privilege because no one has taken this right away from me.
Driving – Do I drive? What car? Where do I want to go?
Do I use drugs and/or alcohol? How often and how much? This one really gets me. I see people throwing their lives away using drugs and alcohol while many people with disabilities can’t even make this simple choice. They take all of their abilities for granted when they take the risk of harming their brains and their bodies.
I get to make my own schedule. I get to choose if I go out today or stay home.
I get to choose if I want to be a good person or a bad person, a law-abiding citizen or a criminal. People who make the choice of being a criminal take their freedom for granted.
I get to go into any building that is only accessible by stairs because I am able to walk.
I get to choose who touches me and how they touch me. I get to choose to have a sexual partner or not. Many people with disabilities do not get to choose this and many are victims of sexual predators and human trafficking.
I get to choose how I communicate and with whom because I am able to speak and to read and write.
Every person has these same rights, even if they are under the guardianship of someone else. They have to rely on that person and others to help them make choices and not to simply choose for them. If you are a guardian, choose wisely, and give them as many opportunities to choose for themselves as you possibly can. It will make a world of difference in their life.
Every single choice I get to make in my day - each and every day - is a true gift. Don't take your choices for granted.
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