College With a Disability

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College can be hard enough on the average person. It is a strenuous full time job of writing papers, studying, reading the material, re-reading the material, studying some more, and praying that you pass the midterm tests.

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[Image shows notes featuring details about the skeletal system. There’s a blue gel pen and a set of highlighters on top of the paper.]

For people with disabilities or illness, this can be especially hard. Previously on here I discussed the issue of accessibility in college. I discussed how some lecture classes were nothing but stairs, how some class rooms were so cluttered you couldn’t fit through, etc. This semester has made it apparent that there is still more to discuss: absenteeism, testing, pain management and fatigue management while at college.

It is important that regardless of severity of your illness or disability that you know help is offered, though some colleges are more accommodating than others.  Some colleges allow extra test time, or taking the test at a different time alone to make it more accessible, while some colleges have better things to offer such as text-to-speech options, transportation from classes (at larger colleges), and in some cases omitting the 3-absentee rule.

This is why it is important to talk to the disabilities office at your college to see what types of accommodations can be made for you. Of course some will require notes from doctors and proof of diagnosis before you get accommodations, but in some cases simply talking to your advisor or talking to the disabilities office about your concerns for the semester can help them find a way to help you out.

In my case, I have preferential seating (even though in college there’s very rarely assigned seating), but after I had an issue with one professor assigning seats and trying to put me in the top row (of stairs), we talked with disabilities and got it all sorted out. I can take my lab practicals by myself while the teacher switches out the slides for me, because after the first practical we discovered that her testing style was not very accessible. You had to move around the class room, you only had a minute to answer 3 questions per slide, and people were not pushing in their chairs, which makes it a bit hard with a mobility device.

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[Image shows me standing with my walker, I’m wearing jeans and a white t-shirt with sign language spelling out “Bruh” and carrying my backpack over my shoulder hooked up to my feeding tube.]

Some professors can be really accommodating on their own if you talk to them. For the changing of lab practical style for me, I didn’t even have to go through the disabilities office. I simply messaged the professor and explained how it was difficult with up and down movement due to my POTS and that without people pushing in their seats I couldn’t maneuver around to the stations easily.

But the biggest issue is attendance at college, most colleges have a rule that after 3 missed classes, they can simply fail you. While some professors are lenient on this policy, others will dock your grade a letter for every time you miss.  Talk to your professors and the disability office. Sometimes they can make accommodations so that absenteeism isn’t held against you.

Being in college all week can be hard when you also have doctors’ appointments throughout the week almost every week, not to mention surgeries, unplanned ER trips, and not to mention just being too exhausted or in too much pain to make it to class some days.

I think colleges tend to forget this. It is hard to keep up with everything and also keep up with all the college work. I am only taking 4 classes this semester but am still struggling because I also had to have surgery, deal with pain and exhaustion, brain fog from medication, etc.

And then some colleges decide the best way to deal with people struggling in college is to guilt trip them. My college sent out emails to students saying their grades reflected on them, their family, their significant others and could negatively impact the rest of their lives.

This is not the way you deal with students when 1 in 2 Americans now have a chronic condition of some kind whether it be something like Asthma or something more severe like Cystic Fibrosis. Regardless of severity, there is an increase in chronic illnesses and diseases, which means an increase in disability. Which is expected to only increase as the years go on.

With this in mind, you think schools would be more equipped to handle the students out of nearly 133 million people struggling. And while some people can manage their illnesses and have zero interference with college, many struggle with controlling symptoms and side effects of their illnesses.

Perhaps this stems from the fact that the majority of illnesses are invisible illnesses.

“Notably, 26 million persons were considered to have a severe disability; yet, only 7 million persons used a visible device for mobility. Thus, 19 million of the people who were defined as severely disabled, did not use a wheelchair, cane, crutches or walkers. In other words, 73% of Americans with severe disabilities do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses visible assistive equipment.” -National Invisible Chronic Illness Awareness Week

So with the facts, why are colleges still lacking a lot of accommodations? I have been thankful that my college has worked so well with me, but I know others who attend my college and have disabilities or illnesses who receive limited to no accommodations or support from professors. I think it’s important to talk about these things in order to see a change.

With statistics showing that chronic illnesses are on the rise and will continue to rise, it’s important for the world to take the steps to make sure everyone has a chance to receive education.

Is your college accommodating to your illness/disability? If not, what would you like to see be changed?

To quote Malala Yousafzai, “Let us remember: One book, one pen, one child, and one teacher can change the world.”

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Dysautonomia Awareness Month

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[Image shows three spoons on a laptop keyboard. Overlaid is torn white notebook paper with a red paper clip. On the paper in black text reads “Dysautonomia Awareness Month” with a teal awareness ribbon. At the bottom in small red text reads “Thee Crohnie Grace”]

According to Dysautonomia International, “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.”

All my life I had issues with tachycardia and low blood pressure, my dizziness was often wrote off as “Well you just stood up too quickly, that happens to everyone.” 19 years later, I have a cardiologist scheduling me with an electrophysiologist to confirm his diagnosis of POTS, one of the different forms of Dysautonomia.

Other forms include: Neurocardiogenic Syncope (NCS) and Multiple System Atrophy (MSA).

Over 70 million people world wide lives with Dysautonomia. It often is a comorbidity of Ehlers Danlos Syndrome as well as: diabetes, MS, RA, Sjogren’s, and others.

Since the majority of my zebra friends have POTS, that is my main focus here.

The diagnostic criteria for POTS is a heart rate increase of 30 beats per minute or more when standing in the first 10 minutes of standing, or a heart rate of over 120 in the first ten minutes of standing.

Symptoms range from mild to severe. POTS is a syndrome, it stands for Postural Orthostatic Tachycardia syndrome. Often it is caused by another disease. It has many causes including but not limited to:

  • Autoimmune Diseases
  • Chiari Malformation
  • Diabetes and pre-diabetes
  • Ehlers Danlos Syndrome
  • Multiple Sclerosis
  • Mitochondrial Diseases
  • Mast Cell Activation Disorders
  • And Many More!

Currently there is few treatments for POTS, mostly just increasing fluids and salt intake, some doctors will recommend Beta Blockers, compression socks, and various other life style changes.

Some things that people with Dysautonomia wish people knew:

“That it’s not over-exaggerating or being a drama queen and it’s a serious chronic illness that effects all of the body functions we don’t consciously control. I’m not lazy, I’m not making excuses, and I’m not faking.” -Ari Dennis 

“That just because I look perfectly health doesn’t mean I am. My diseases are still trying to kill me and one day they’ll succeed.” -Leigh Bullis

“Don’t laugh at me or call me lazy when I ask you to pick something up that I dropped. Bending over is one of the biggest challenges I face, and I think out of everything, it’s the most under estimated of struggles.” -Allie Mary

“It’s not funny when I fall or forget words or phrases when my brain is literally lacking oxygen. And it’s not fun to be forced to spend the majority of your day with your feet propped up, and the rest of the time with them not up having a migraine.” -Kaylee Gallagher
“Don’t tell me it must be nice to lie down most of the time because it’s not… it can get quite depressing after a while.” -Cassie Gunn

I never realized it wasn’t normal until it started getting bad. I stand up and my heart rate goes to 160 sometimes higher. The room will get dark and stay like that for a long time sometimes or until I sit back down. I can feel my whole body pulsing, my chest feeling like I can’t get enough oxygen, like there’s been weights put on top of me trying to lower me to the ground. When I walk, it feels like I’m on a boat, everything feels like it’s shifting right under me. I’ve ran into walls at the college because my balance was thrown off by the dizziness.

October is Dysautonomia Awareness month, but for some people it’s 24/7.

 

 

Citation

“Dysautonomia International: Postural Orthostatic Tachycardia Syndrome.”Dysautonomia International: Postural Orthostatic Tachycardia Syndrome. N.p., n.d. Web. 13 Oct. 2016.