Be Mad

For the first 16 years of my life, I was perfectly healthy. My exercise levels, eating habits, and health records were above average.
So when I walked into my pediatrician's office with invisible symptoms and no obvious explanation, I was completely brushed off. I saw them 4 separate times before my mom took me to a new doctor in hopes of actually being heard. I saw this new PCP 4 or 5 times before she, too, dismissed me. Over the next several years, doctors told me over and over again that I was fine.

My family, of course, knew that something was very wrong. They lived with me. They saw me sleep for days at a time and lose my ability to process simple information. They saw my speaking and thinking abilities decline. They watched as my existence collapsed around me.
But this was a private struggle.

My doctors were not there for these moments, so they did not understand. My friends and extended family and church leaders and teachers were not there for these moments either.

Essentially every person in my life thought that my symptoms were my choices, and without a diagnosis, I couldn't prove them wrong. You would think that the world would be kind to a young, sick girl, but instead I was blamed for my own illness. Not being able to live my life was hard enough, but almost worse was the omnipresent disapproval. I internalized this, and I began questioning myself. I began to think that maybe it was my fault that I was sick. I agreed with everyone around me: I was being lazy. I was to blame. I was useless.

One day, I decided that I was done being sick. I told myself it was over. The doctors were right; it was in my head. So I got out of bed and I pulled out my old running shoes and I went on a 20 minute run. I did the whole thing without fainting, but within the first ten steps I had a searing pain in the back of my head and my body felt weak. When I got back, I collapsed on my bed and slept for 4 days.

This was obviously incredibly counter-productive. I should've been taking care of myself, not trying to meet uninformed outsiders' expectations.

I'm sick ((haha get it?)) of ignorant people thinking that they know anything at all about my situation. It's been over two years since this started and I still have to deal with unjust scrutiny on a daily basis.

Last Christmas my extended family thought it would be okay to start a rumor that I have an eating disorder, and that is why I am sick. Apparently, two diagnoses from medical professionals after years of testing mean nothing to people that want to make their own assumptions. Apparently, I am no longer the authority on my own health. Why support me with my debilitating illness when you can make up your own story out of thin air, just for kicks, instead?

I am frequently yelled at or given dirty looks when I go to my car parked in a handicap spot. I get extreme anxiety about entering or leaving my vehicle. Sometimes its easier to make myself sick from walking than to endure public scrutiny over whether or not I deserve the spot. Why mind your own business when you can make a disabled person feel bad about using accommodation?

I have spent years being argued over and gossiped about, tossed from doctor to doctor, looked over, ignored, and hated on because of my sickness. I've been judged because of my physical appearance by doctors, friends, family, and strangers.

I used to be a sixteen-year-old girl that thought that everyone had a right to their opinion. I used to feel bad for making people uncomfortable, and I felt bad about being upset by the words people said. As a kid, as a female, as someone that tries to be nice to everyone I meet, I am used to swallowing my anger and letting things be. I assume, always, that I am in the wrong.
I go on runs instead of listening to my body beg for sleep and I park in the back of the lot instead of daring to take a handicap spot. I let others blame me, and then I blamed myself.

No longer.

I am furious at the members of my family that decided to take an emotionally and physically traumatic experience and turn it into a way of hurting me even more. I am furious at the doctors that refused to take me seriously, despite having no reason not to. I am furious at the teachers that tried to stop me from taking online classes because they thought I was being lazy. I am furious at the members of my church that called me a sinner for not attending because I was too sick to go. I am furious at every single individual that thought that their ignorant input meant anything at all.

I have learned that I do not have any obligation towards anyone, ever. I never have to justify myself or my illness or my limitations to anyone. I do not have to inform stupid people about my personal experiences in order for them to respect me. My trauma is not justification for me to be treated fairly. I deserve to be treated fairly regardless.

I have accepted the fact that this is a battle I will have to fight for the rest of my life. I will gladly fight it. I am done accepting what the world wants to think about me.

I am aware that the majority of people that read my blog do not have a chronic invisible illness, let alone two. I know that it might be hard for you to relate to me, but I hope that you are as angry as I am at the way people treat each other. Stop being timid and shy and nice about things that deserve your anger. I thought I did not deserve to be angry, but I was so incredibly wrong. I hope you look at the things you let slide in your life and you stop letting them slide. I want you to look at your swallowed anger and find what matters to you. Then, be angry, be loud, be heard.

I am furious, and you should be too.

What Lack of Disability Accommodation Means to Me

I would like to begin by apologizing for the long break between posts. The problem with writing about disability and depression is that you have to deal with disability and depression and sometimes that alone is all-consuming.
Thank you for your patience.
xx Brooklyn

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Before I had a diagnosis I was not legally disabled, and as such I had difficulty finding others with similar experiences. Despite several years of having a disability, I have only recently found myself to be part of the disability community.  Settling into this newfound headspace has been enlightening for me. I have found a group of people who advocate for themselves, and by doing so advocate for me. 

As I have watched these individuals speak about their experiences as a marginalized group, I have found that I am becoming increasingly impassioned about my own rights. 

When I first moved into my apartment, the only handicap spots were at the basement level of the parking garage. As the site was still undergoing construction, elevators had not been put in yet. This means that to park in a handicap spot I had to walk up several flights of stairs to get to my apartment. I called the property manager and asked about when handicap parking on all levels would be implemented, and they said that it was "indefinite". 

When I received my accommodation reports for my classes, one of them simply said that they couldn't make any modifications for me. This means that if I am sick and miss one of these class periods, my grade is affected the same as every other student's despite my medically-supported need for a modified attendance policy. 

I woke up terribly sick last week but I still forced myself to go to school. I drove to my second class of the day but found no handicap spots open within a half mile of the classroom. I was too sick to walk that far so instead of going to class I parked my car and I cried. 

A few months ago I would have been sad about these things, but I would have told myself that this is just what happens when you're disabled. I would have reminded myself that I am a burden and that I am not allowed to ask for more than what everyone else gets. 

Now, however, I refuse to speak to myself this way. I refuse to accept the discrimination of these companies. 

These may seem like insignificant experiences. When you are not disabled, it is hard to understand the impact that these types of things can have. If you are having trouble understanding how this makes me feel, let me explain.

I spend my entire life trying to convince people that my existence is worth accommodating.

When my school refuses to give me attendance modification, they are telling me that I, as a person, am not worth the extra hassle that it would take to create a new attendance policy. They are saying that I don't deserve assistance despite the legal and medical proof that it is a necessity. 

When my school has inadequate disability parking, they are telling me that it is too inconvenient to make it so that I can go to class. They will pay for my tuition but they will not pay for my accommodation. They want me there as long as I am able-bodied. 

When my building refuses to make their apartments handicap accessible, they are telling me that my existence is inconvenient to them. It would take too much time and money and effort for them to make it so that I can walk into my unit.

It really sucks when your own home doesn't want you. 

I am so tired of being told that I do not matter. I am tired of asking people to respect my worth as a human being. 

There is guilt and shame around asking for accommodations. It feels like cheating. But it isn't cheating. As my boyfriend told me a few days ago, it's just "leveling the playing field". 

If you have a disability of any kind, physical, mental, or emotional, I hope you do not hesitate to ask for accommodation. I hope you remember that your capabilities have absolutely no effect on your value as a human being. I hope you know that it isn't taking the easy way out. It's giving yourself the power to live your life as fully as possible. No able-bodied person deserves that more than you do. 

If you don't have a disability, I hope you take time to notice the messages you are sending to those around you. Do you get irritated when someone needs a little extra time or assistance? Do you find it inconvenient to adjust your plans to accommodate those that are less able? If you do, I can assure you it is much much more inconvenient for them than it is for you. 

Please stand up for your disabled friends and family. Together we can stop society from inundating our chronically ill and disabled friends with messages of incompetence and shame. 

Our lives are hard enough without having to beg to be respected as human beings. 

I am done being told that I am a burden. I will not listen to these messages anymore.

I hope you will help me fight them.