My parents often tell me about an experience they went through right before I started elementary school. They had a meeting with my principal where they took a tour of the school and made sure that it would be accessible and right for me. It was a public school, but they still wanted to make sure that I would be able to get everywhere that the other kids would be. During one part of the tour, they were taken to the gym and told that most of the kids used an exterior exit connected to the gym in order to play sports on the playground. There was a step by that door that the principal didn’t notice and when my parents brought it up later, she said there was no step. It wasn’t like she was lying, she honestly didn’t register that there was a step and in the end she had to be shown again by my parents that there was indeed a step going outside.
These kind of stories are sprinkled throughout my childhood and my life in general. I have talked before, and will talk again about how unless you were personally exposed to the difficulties that a lack of accessibility can bring to someone with a disability, you don’t tend to notice it yourself. This tendency is compounded and amplified when talking about access to education.
Elementary, Middle, and High School
While the example about accessibility in my elementary school would have been serious if that door was the only entrance or exit in the building, it is a relatively lighthearted example. Like elevators breaking and thumbtacks somehow ending up in my wheels, physical accessibility issues can happen anywhere and are not specific to schools for the most part. And in my experience, small things like that don’t necessarily prevent people with disabilities from having the same educational experience as their peers.
I was pretty lucky for the most part in my early years. I went to a good public school and I had an IEP (individualized education plan) that was mostly followed without incident. I socialized with peers the way I needed to and I was able to succeed in school with the help of a paraprofessional who helped me with physical tasks. I know some people who weren’t as lucky as I was and I definitely don’t want to frame my experiences like I’m some kind of martyr, but I have learned a lot through my journey on the educational system in America and there are definitely things that I wish I could go back and tell myself, as well as situations related to my disability that I would now handle better as an adult. But regardless of what has happened to me personally, I know that it can be better for everyone. No one should be deprived of a good education for any reason in the 21st century.
IEPs, 504s, and What They Mean
One of the most important things to have if you are disabled and attend school is an IEP or a 504. These are legal documents that contain a description of the students disability, as well as what accommodations will be required for the student to fully participate in class. Teachers have to follow this because it is a legal document. Some teachers may try to get around it in some way, whether that is because of lack of time or resources, or the teachers lack of knowledge on the students disability and background. Whatever the reasoning may be, it is irrelevant because not following the IEP or 504 is unacceptable, regardless of the reason. Here is a good website that explains IEPs and 504s a little better.
When I was in high school, one detail in my IEP was that if there was any drawing or other hand-intensive work (for lack of a better term), I was allowed to get extra time and I was also allowed to have someone help me do it. One of my teachers fought against this pretty hard (and no, it wasn’t for an art class or any class that tested skillfulness in drawing), but since that accommodation was listed in my IEP, her hands were tied. I could not be penalized for my disability or what my disability prevented me from doing.
When I got to college, my disability was treated very differently. It was a bit of a shock for me. All of a sudden, I was not entitled to a paraprofessional to be with me in class. I had to supply this helper myself, so it ended up being a personal care attendant (also called a PCA) who was only allowed to help me with my personal care (such as re-situating me in my wheelchair and helping with little adjustments during class). A friend of mine with a similar disability actually had a couple of experiences where her PCA was asked to leave the class because she was not paying for it. While that never happened to me, I was always aware of the possibility and feared in the back of my mind that I would be deprived of the only help I had.
I mentioned in another blog post, possibly a few, that I will be going to law school in August. One thing that really impressed me about the school that I’m going to is that their attitude about disability is very inclusive and accommodating. During my undergraduate time, I had to have my accommodations form (the college version of an IEP) finished early in the semester and could not make any changes throughout the semester. For law school, the person in charge of disability services told me that we can play everything by ear and determine what I need as I run into any issues throughout the semester. This willingness to work with me instead of over me, is the way I wish all schools were. In her words: “If our tests are in a format not compatible with teaching you what you need to know, it’s our job to fix it so that you are on an equal playing field.” This willingness to make changes and accommodations as needed is something I have never experienced before.
Standardized testing is a whole different ball game. Often, when applying to take the ACT, SAT, and LSAT (the law school entrance exam – I don’t know about many other exams and what you need to do for those), you have to apply for accommodations separately. They are not automatic just because you have accommodations in high school or college. To do this, you often have to supply medical documentation to the testing body but many will accept IEPs and other school-based documentation when making their decisions about accommodations.
When you take the ACT or SAT in high school, your guidance counselor and support team (if you have one) will do much of the heavy lifting when it comes to applying for accommodations. I did not know how much was required to apply for accommodations until I decided to take the LSAT. I had to supply tons and tons of medical documentation and often had to submit things more than once with minor changes before they would give me their answer. About a week before the test I finally got my accommodations sorted out, but it was very stressful experience. I was supposed to have all my paperwork done by the time I registered for the test three months ahead of time. I turned in all my paperwork on time but it took that long for them to decide on my accommodations. Stressful.
One thing that I found helpful to remember throughout the process is that I am the best judge of my own disability. I used to get very insulted when I wouldn’t get accommodations that I knew I needed. I got caught up in the fact that somebody was disagreeing with my disability in a way, and saying that I didn’t need something I knew I needed. It’s important to not get bogged down in defeatist thinking when you get a bad decision handed down. In most cases, you can appeal any decision you don’t like. While applying for the LSAT and law school, my mantra has been “I know how to help myself better than others know how to help me. My job is to communicate my needs so they can agree with my judgement.” This has helped to prevent me from taking things too personally when I get an answer I don’t like.
As with most, if not all situations, you are your own best advocate. You know what you need and unless somebody is actively working against you, there are people out there who genuinely want to help and would be happy to give you almost any accommodation you need so that you may get an education.
If you still feel like you cannot handle it on your own, there are many organizations whose sole purpose is to advocate for students with disabilities. These people are trained and know what to look out for when you are having some difficulty advocating for yourself or child. They also may have additional resources that the school district does not which may help you/your child succeed in school.
When I try to look forward to starting school again after five years out of the educational system, I sometimes wonder why I’m doing this. Sure, I would like a degree and the ability to help people with said degree, but when I remember all the bad things that have happened to me and the stress that I’ve been to in regards to my disability in school, I do have to stop for a moment and ask myself if this is really a road I want to go down again. If I wasn’t accepted to the school I was, I probably wouldn’t. But since my best trait is my ability and willingness to advocate for others, I know it’s important that I also must advocate for myself. Like I said before, everyone is entitled to a good education. When that doesn’t happen, it’s terrible and I wish those situations didn’t exist. But I can certainly use my experiences to help others going through school and struggling with things that I once struggled with. I would be grateful for the opportunity.
The following are some resources I have found to help people with disabilities and their access to education. If you know of any others, please comment and let me know!