So if you go to my blog, you can read about my history with my vision. Basically, when I was about 12 or 13, my vision began to fail, but i said nothing. It wasn’t until I was 14 that I actually knew something was seriously wrong. Meanwhile, I had gotten so sick, I couldn’t go to school. I had to be on home schooling for three months while my body literally fell apart. I went to countless doctors, and all anyone could see was my vision. I have what is still called an idiopathic condition, but essentially, my body spontaneously rejected my eyes and tried to kill them like invaders. They swelled and nearly popped out. My body sloughed off so much protein that the fluid in my eye was a fog. My macula swelled and cut off circulation to my retina, etc. I had to have steroid injections in the eyes, take hourly steroid drops, wear sunglasses because my eyes no longer responded to changes in lighting conditions, and had to relearn how to do everything. In the space of a few months, I lost 60% of total vision. I walked with a cane (not a blind cane, but just a cane, because that’s part of the story). I could not do anything anymore, when I had left school an award winning artist who read a 300 page book in a few hours, was an ROTC member, a straight A student, and so on.
Instead of saying “Oh my god, how can we help you cope with this…” my school became a stressor even greater than my disability and my fear I might be dying of something.
I had chronic fatigue and horrible migraines due to eye strain. I walked into things. I got lost. I couldn’t track lectures. I couldn’t SEE.
Let me tell you what I dealt with.
I had teachers tell me to take off my sunglasses, despite having a doctor’s note on file. I had to fight them and be sent to the office more than once, then argue with the principal to keep wearing them. I had teachers take away my time sensitive medicines that kept my eyes from swelling out of my skull, go to the office and argue with the staff. I had teachers who knew I couldn’t see their lecture, send me to the office to enlarge my own copies of their notes, because apparently there was nothing for me in class, nevermind that they spent the entire time talking. I had teachers take my cd player from me, even though I used it to read.
I’m not even fucking started.
I was put into PE. I can’t do PE. The entire class was ball games, running, and hand eye coordination. DUH. I said, I can’t do PE. The school said that some form of phys ed was mandatory. and there was nothing about my disability preventing me from doing weight training. One problem. Weight training conflicted with my AP classes, which were on a set track schedule. I would have had to sacrifice my standing in the class, my education, my competitiveness for a place in a college, JUST to take weight training. I said no. I went to my doctor. He wrote me a note saying “Kristina has a chronic, idiopathic illness that results in chronic fatigue, joint pain, immobility, frequent migraines, and dizziness, She takes many medications that effect performance, bleeding, and carry serious risks.She cannot physically participate in any PE activity.” I walked this note to my guidance counselor…….wearing the first and only cute dress I ever wore to my school…I walked in and said to the secretary, “I need to turn this note over to my counselor.”
She says to me “What’s it for?”
“It’s a medical release from PE. She needs it so I can be rescheduled.”
“Oh…are you pregnant or is that just your stomach.”
I never wore a dress again.
It took me years to feel confident.
Then…they told me I had to take driver’s ed. Like…there was no choice, because it was a segment of a “mandatory elective”. A WTF? Yup! We had these classes. See, we had academies, kind of like majors. In each academy there was like a core class that changed what it was doing on a six week rotation. It was called the mandatory elective, and you only had like two choices within your academy. Both contained driver’s ed. I told them, this six weeks of my life is absolute bullshit. I cannot drive and I never will be able to. I can’t even see the manual you’ve given me to review. What the fuck is this.
I got a perfect score and wasted six fucking weeks I could have been studying for the SAT.
It doesn’t end there. I was picked on by fellow students, but only because the teachers themselves picked on me. They mocked my tripping, mocked my inability to tell colors apart. They allowed other students to mock me. Thankfully, I was popular with many teachers and in many classes, and had a group of popular friends. I had people to support me. I got to the point where I made a rule that everyone got two blind jokes a day. Go past that, and I will fuck you up.
Then there was the time I talked about in my blog when I was sleected by my ROTC captain for an elite leadership academy, but because this academy gave privileges in the actual military, which I’d never be able to attend, the student who wasnt allowed to go got upset and took their complaint to the school board. My captain defended me telling them that the academy wasnt a military recruitment program. it was there to teach the best of the best how to be better, whether or not they go into the military. I understood the point though. I did’t eel right about taking that from him. So I told him we could have a contest for the spot. I told him I’d train to do the PFT test and he could too, for two weeks,a nd then whichever one of us couldn’t make it, didn’t go. I made my marks, through rigorous training, I ran three miles a day, with a team of spotters. I made my marks. He didnt. But because at the last minute, another school canceled, we got to bring one additional person. So he went. The whole fucking time he bitched about me being there. I decided on the way up I was not going to take any shit from these clowns.
When the drill instructor tried to tell me to remove my sun glasses, i told him he could consult my attorney and the DOJ abotu the rights of disabled students. When they told me I could take it easy, like it was some fucking condescending favor, i pushed harder. I told all my friends to push me. I didn’t want to just test out on the female PFT standards. I wanted to test out on the male ones. AND I DID. One the final test, while I had completed my 1.5 mile run and was walking around the track encouraging the people I was friends with, I passed that boy, wheezing so hard I laughed. He didn’t even finish. He failed. He didn’t get a certificate. I got a handshake from the drill instructor. I was told he was impressed with me, and that it was a pity I couldn’t join. I thanked him and told him he couldn’t pay me enough money to join.
I fought every fucking day in high school. I fought with everyone. I thought that was how it was supposed to be. That I’d just have to be a bitch from now on, just slash people with words left and right, just fuck everyone up. Then my retinologist said magical words when I was crying one day over how badly the stress was effecting my vision.
“That’s illegal. You need to contact social security.”
I didn’t know what he meant. He explained that the government had programs for people like me. I could get financial help. I could get tools and equipment. I could get the school to do its job.
I was flabbergasted. I went to the Department of Rehabilitation, to the Scoial Security Department, to the DOJ, and I filled out all the paperwork. By the end of the month, I had adaptive tech, a bank account that paid me a few hundred every week to offset the horrible costs of caring for me, and most importantly, an agent on my side.
She came to the school. I told her what I’d been dealing with. She was so shocked, I thought she was about to scream or cry. She called the principal right in front of me and demanded a meeting. She had six people in that room with us. They began to speak about how this meeting was uncalled for. She shut them down so hard I thought I’d die from how happily I cried. She told them their behavior was appalling. That there was never a more perfect example of what adaptive assistance could do for this world, because I was an exceptional student with amazing aptitudes who was suffering merely because they couldn’t alter my education to suit physical limitations. She cited laws and statutes and told them that if they did not comply that she would level a law suit so severe they would have to shut the school down to fix the situation. Then she told them what they had to do to become compliant…
When the teacher who had sent me from class to photocopy her notes objected, this agent talked over the top of her and said that if her lecture was so worthless that anybody could get all they needed simply by photocopying the notes, then maybe she should retire. I was like HOLY FUCK. The woman said “There is a great deal of additional content in my lectures.” The agent’s reply? “Then why are you keeping it from Kristina? Is it because she’s blind?”
Could’ve heard a fucking pin drop.
I think it’s important for me to say this. This teacher was my AP English teacher. I passed that AP exam with a 5. which is a perfect score. I also am now a published author. I spent more than 75% of her class in the library. She retired.
After that one meeting, my life changed. This agent trained me how to live. She got me cane technicians, braille instructions, took me to malls to help me learn how to ride an escalator. She taught me how to look for things if I dropped them, how to reclaim my identity and my independence. She let me know I had a right to be a person again, not just a disability or a medical condition.
I cannot tell you what it feels like…because I can’t explain what it was like before. I was fine, and then I wasn’t. I was in pain. My migraines lasted days and were so severe, I couldn’t move or I’d vomit. My skin turned yellow. I slept 23 hours a day. I hate almost nothing. I was in agony so bad that wearing clothes hurt. I was taken to sometimes four doctors in a week. I gave so much blood for tests I had to be put on an iron supplement. Every single time it was another horrifying thing like “You might have leukemia” to another doctor who wanted to tell me it was either drugs or in my head. I thought I was dying. I made a will. I fell into depression. I had to fight just to keep myself alive, and these fuckers at my school didn’t give a shit. And then there were the doctors who just wrote me off or treated me with disrespect, just to hurt this uppity fucking girl who dared to tell them that her symptoms didn’t match their diagnoses. No one listened or cared and I was literally losing my hair. I was so stressed I chewed all the skin off my fingers. I became Obsessive Compulsive just trying to cope.
And here was this lady, like an angel…telling me I had a right to be a person to just learn shit and be normal. And she was normal. She was just a lady who gave a shit. She had no family with illness. No deep disability of her own. She was just a lady who had empathy and the authority of the government. I owe all my success to her…
And I cannot even remember her name.
If you think that disabled people have it good, you’re fucking stupid. If you think I’d rather be this than healthy, you’re a fucking asshole. And if you think that one small act, like sticking up for your friend, telling teachers to do their job, or advocating for someone won’t do anything…you’re just wrong.
It means the world. It means everything. There are so many ways this world would be different if the people I’ve known who were disabled had everything they needed. Do you know why? Because we know what struggle is. We know empathy. We know what it’s like to be trapped in a body and be treated like scum even when we have so much to offer. We know that feeling. If you gave us what we needed, we would tear your world apart and teach you how to live. And that’s why they fear us.
Guess what? I have the honor and privilege to be able to speak for these people because I now have most of what i need to be able to meet able-bodied people at the line. You don’t like what I have to say? Too bad.
Ask the man at the laundromat who tried to drag my guide dog out what i think of calling the fucking cops. Ask my high school about their sterling record for disabled kids since I left. Ask every fucking person who has ever gotten in my way.
