My son, Joshua, has been my greatest teacher. His mental challenges, Autism and Developmental Delay, have helped me to discover that everyone suffers from a kind of mental challenge psychologically. This discovery has been life changing for me, showing me the way to happiness no matter what life brings. My goal is to help you discover the wisdom within yourself to create peace in your life. Here is our story...
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.
We often hear about ageism, racism, white privilege, sexism, and gender privilege, but one thing we do not often hear about is ableism and able privilege. Before I was the mom of a child with special needs, I was oblivious to all of the physical, mental, and emotional barriers faced by people with disabilities. I remained oblivious for several years after becoming Joshua’s mother because I did not recognize biases within myself or within our systems. There are things that seem perfectly logical on the surface, but the reality for people with disabilities is that they may be practical, financially and socially, but that does not make them fair. People with disabilities face discrimination based on practicality in large and small ways on a regular basis. In this post, we will explore some individual biases and privileges, based on my own experiences with my son, and we will briefly explore societal and systemic ableism and privilege.
Ableism is a bias, intentional or unintentional, towards people with disabilities or perceived disabilities that often leads to discrimination, devaluing, or limiting the potential or experiences of people with disabilities. A privilege can be considered in a couple of ways: 1) A special right, advantage, or immunity available only to a particular group of people – in this case, the fully abled; 2) a psychological edge you gain when you have the luxury of being oblivious to other people’s reality. In other words, the stuff we never have to think about when we are fully able. These biases and privileges take place because people with disabilities are in the minority, but sometimes it is due to our own desires or ignorance, as we will see.
As Joshua’s mother, I have unwittingly engaged in able privilege by being oblivious to his reality. We do this when we do not realize that others do not have the same experiences we have. Even when we do realize it, it is easy for us to forget because we are not experiencing it 24 hours a day, seven days a week. For example, when speaking to my son, I used to assume he has the same experience of hearing and comprehending that I have. In reality, I can’t really know what hearing and comprehending are like for him because I am not him. Whether it is due to his limited cognitive ability or his auditory processing, he simply cannot process language the same way I do. This is something I have to constantly remind myself when I speak to him. I have to give him time to process what I have said because it is not instant for him like it is for me. I have to remind myself that repeating it to him over and over when he does not respond immediately only makes it more difficult for him because he has to process it each time I repeat it. If I can remember his reality, life is easier for both of us. Another example related to communication is when a deaf person’s family does not learn sign language. I have heard several stories of families doing this because they can hear and feel it is unnecessary to learn it, even though it would make communication with their loved one much easier. Here is a short video made by some brothers who are deaf: Things hearing people don't have to think about
When Josh was a little boy, he was terrified of strangers. He would be fine unless someone tried to say hello to him or shake his hand or pat him on the head. Then, he would recoil and start to cry. This was also true of doctors and nurses. When they entered the room, he cried and fussed with a look of terror on his face. He did not want to be touched or spoken to. He was fine with people he knew, though. He had been diagnosed with mild A-typical Cerebral Palsy, but for a few years, I had been wondering about autism. I read as much as I could about it and felt that I understood it fairly well. I had begun to really think that Joshua was autistic. I knew some autistic people were fearful of strangers and I knew some did not like to be touched. Still, I never put it together in my mind that he was displaying an autism characteristic when he recoiled from strangers. All I thought about was my embarrassment and frustration because people appeared to feel annoyed that he did not welcome their kindness. I had the luxury of not feeling my son’s feelings because I could not relate to what was going on inside of him. The day I finally put two and two together was the day he was diagnosed with autism. I was frustrated at the doctor’s office because Josh cried from the moment the doctor walked into the room. I told the doctor I thought Josh was autistic and he agreed. Then, he tried to speak to Josh. He got nowhere, of course, because Josh started crying louder and backing away from him. I made the offhanded comment, “I don’t why he does this.” The doctor’s response was, “That’s autism.” Light bulb! We have to look at each behavior and relate it to the diagnosis. That is not easy when we are used to going through life without having to do it, but the people we love will have much less stress if we can learn to do it. It requires that we learn about the diagnosis, however, and not everyone is going to want to spend time learning about it. That is an example of able privilege. We don’t feel it, so we choose not to learn about it.
My privilege allows me to hide things from my son. I don’t do it to annoy him or to frustrate him. I do it for my own sanity. I hide photos from him because he becomes obsessed with them, constantly wanting me to name the people in them. I hide his hats when he is in the bathtub if they need to be washed because if he sees them after his bath he won’t give them to me. In a way, I feel bad for doing these things, but I don’t know what else to do to help us live together peacefully. To me, it is trivial that I hide things from him, but I have the luxury of not feeling what it is like for him. To a person with disabilities, it is the little everyday things that add up to a whole lot of frustration. Here is a short video to help us understand: What it’s like to be autistic
We can recognize ableism when we hear stories of people with disabilities being taken advantage of financially. There are also times when we are confronted by ableism through bullying. I was at a meeting speaking with another mom when Josh was playing in the hallway with some other children. I thought it was nice that they were playing together. Some of the children had disabilities and some were their siblings. A minute or two passed and I walked into the hallway, preparing to leave. The children were on the elevator, giggling and trying to coax Joshua onto the elevator. I got a sinking feeling in my stomach as I realize they were either going to ride up with him and leave him on another floor, or they were going to get off and make him ride up by himself. They gave themselves away when they suddenly stopped giggling and looked at us with guilt on their faces. I have always known how vulnerable Joshua is, but this incident made me realize he is vulnerable with people I would never think would harm him, or trick him, or bully him. People with disabilities and their siblings can be cruel to others just the same as people without them, showing us that no one is immune to able bias or able privilege. Unfortunately, biases do not naturally stop as a result of aging.
Parents of typical children sometimes do not want students with disabilities in inclusive classrooms because they claim it slows down their child’s progress. This bias hurts everyone involved, including their own children. It teaches children that difference is something that does not have to be tolerated and it ignores the compassion and empathy typical children can embrace by having peers with disabilities in their classrooms. Furthermore, it places competition above human decency. Sadly, it is not just parents of typical children that promote able privilege. Sometimes parents of children with special needs use it to separate their children from others whose abilities do not match the abilities of their own children. Again, everyone loses when this happens. Sometimes, as parents, we don’t realize that our kids internalize more than we think and they are listening, even when we don’t realize it. Impacting our kids in ways we don’t realize 15 Common Phrases (I have done a separate post for this link because it is so powerful! It is called Imagine Yourself in My Shoes.)
The Americans with Disabilities Act (ADA) was enacted to help people with disabilities overcome barriers in the community and in society. The Individuals with Disabilities Education Act (IDEA) was enacted to help people with disabilities receive a free and appropriate public education, in the least restrictive environment. Both of these laws were intended to make life better for people with disabilities. Without them, we would not have made the gains we have made in our community. They are worthwhile laws, no doubt, but they have not ended discrimination or biases against people with disabilities in America. Although not always intentional, bias and privilege are hurtful, just the same, as we in the following examples of systemic ableism.
Our school district categorizes their students according to their graduation year, for purposes of notifying them of activities that pertain to each grade. In special education, students are given a designation of 21, rather than the year they would graduate because they can stay in school through 21 years of age. I was told that this is to keep a clean GPA for the regular education students and that if they categorized the special education students by their graduation year it would result in the special education students getting 4.0 GPAs (because of the grading system in special education), taking high marks and awards away from the regular students. I was also told, “it would not be fair to the regular education students who work so hard for their GPA.” This is practical, but fairness should work in both directions. This policy resulted in my son almost missing out on his senior photos. Luckily, he was able to get in on the make-up day, but I wonder how many other students with special needs were not notified of special activities for their graduation year.
IDEA allowed children all across America to enter schools and receive an education appropriate to their individual needs, but it certainly did nothing to expand some of the educator’s awareness of their able privilege. In some cases, people found a way to get around the law. On two separate occasions, Joshua experienced ableism by speech therapists. These individuals seemed to think they should only have to teach him how to talk rather than teaching him other ways to communicate. They emphasized his non-compliance towards making the sounds they wanted him to make and they spoke of his lack of cooperation - rather than their lack of creativity and knowledge - when trying to take him off of their schedules. They had the luxury of not having to consider Joshua’s reality. He could not communicate and needed a way to express himself that did not require speaking. They were oblivious to other ways to communicate, or they seemed to be. Feigning ignorance may have been a way to save money by refusing services for a child in the special education system. On another occasion, Joshua was not receiving the physical therapy that was written into his education plan because his therapist was on maternity leave. The school did not provide a substitute for her, so we required the school to make up the therapy during the summer school program, after her maternity leave. On yet another occasion, we were not informed that the school district had no speech therapist for any of the children requiring speech therapy, so once we found this out, we found a speech therapist outside the school system and required them to pay for it. They were able to get away with failing to provide it for all the other students, however. Some educators take advantage of a parent’s lack of knowledge regarding the law, so make sure you know the law! Click the link below to read about the reasons for parent's frustrations in the school system. How School Systems Create *That* Parent
As I said earlier, the ADA helped to break down barriers for people with disabilities, however, within the laws themselves we can see examples of ableism and able privilege. The easiest example I can think of is that the ADA requires businesses to “reasonably accommodate” people with disabilities. This means they need to do the least thing possible to accommodate a person’s disability, but if the least thing is not possible, or creates an undue financial burden on the business, the business is excused from complying with the law. This is practical for the business but does not help the person with disabilities to utilize businesses or services available to every able person. It limits them. In fact, even when updates take place in the law, there are biases built in allowing for a level of discrimination to continue. I found this on the ADA’s website, regarding ADA revised standards for 2010 which took effect March 15, 2011.
Barrier Removal Before March 15, 2012
Businesses removing barriers before March 15, 2012, have the choice of using either the 1991 Standards or the 2010 Standards. You must use only one standard for removing barriers in an entire facility. For example, you cannot choose the 1991 Standards for accessible routes and the 2010 Standards for restrooms. (See, ADA 2010 Revised Requirements: Effective Date / Compliance Date at www.ada.gov/ revisedeffectivedates-2010.htm). Remember that if an element complies with the 1991 Standards, a business is not required to make any changes to that element until such time as the business decides to alter that element.
If you have a disability or love someone who does, it probably seems outrageous to you that for a period of one-year businesses, who were doing updates during that year, were allowed to choose a standard that was 21-years-old while a newly updated standard was in place. The ADA is 25 years old now and to this day, we still have businesses that are not accessible to people with mobility issues because it is deemed unreasonable (financially) to accommodate them.
What can we do? We could get creative in figuring out a way to pay for the accommodations that would make our communities completely accessible to everyone! We could check for the availability of grants and apply for them. We could get crowd-funding and other donations from the community or churches. Where there is a will, there is a way. We just need more will.
When it comes to living together, we have a right to have things as we want them, but we must ask ourselves if our rights outweigh someone else’s rights. How do we decide what to do? It can’t always be that the majority prevails because, if that is the case, people with disabilities will lose every time. We think it is unreasonable to expect everyone else to accommodate a small minority of people, but instead, we might begin to think of it as compassionate and empathetic for everyone else to accommodate those who want to participate but cannot due to a disability. Becoming aware of our biases and privileges is not something that is easy for us to do. We do not like to admit our shortcomings even to ourselves. Often we are not aware that we are engaging in a privileged attitude or a bias, so how can we change something we cannot even see? The answer is simple. In every situation, move towards love, inclusion, and a solution that works for everyone - not just the majority. Inclusion and acceptance are about more than tolerance. They are about loving our fellow human beings and allowing them the opportunity to experience life at it’s highest potential in every situation. Until we do that, we will not be experiencing life at our highest potential. A solution that works for everyone may not be possible is every situation. And, people with disabilities have so much love for others that they will not want to take away from someone else’s experience if no solution can be found. It would warm their hearts, however, if they could, at long last, see that everyone was trying to come up with a solution to include them rather than simply throwing up their hands and asserting their able privilege.
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