Not too long ago I wrote a post titled “Why We Need More than the Student Disability Office” which outlined all the things wrong with the student disability office at my alma mater, UNT. Not long after this post went live, I was contacted by Dan Naegeli, who is newly overseeing the UNT Office of Disability Accommodation. The guy who I had so much trouble with is still there, but when it comes to working at a university (or any government job,) there’s always a bigger fish. In this case, the bigger fish found my blog article and requested that I give him a call.
In talking to him, I realized that while it’s good to point out what’s wrong, it’s not very useful if you don’t offer up a way to fix it. I have had lots of solutions for many problems in my mind for a long time, and it’s about time I listed them too. Here’s what I told Dan I thought should happen.
1. SUPPORT STUDENTS. While I did get many comments from students who had a similar experience to mine (not good), I also got a few comments saying not to knock the ODA. I know that many students have a great experience with it. I think the ODA is really good at solving problems that arise. But, like a boyfriend who keeps trying to offer solutions to his girlfriends emotions, they’re missing what most students really need – support. Students need someone in their corner. In my case, I was diagnosed in college and learning the ropes of illness myself. For many, they’ve been sick a long time, but this is the first time they’re away from their number one advocates – their parents. In any case, most students are self-advocating for the first time. They don’t have anyone to affirm that their struggles are real. They need a support team that they feel comfortable talking openly about their health with, and in the U.S., doctors are too expensive to just talk to. What can the ODA do?
- Start by reading about the program DePaul University has. This is what inspired me to start writing this blog and instigate change.
- Peer mentorship. I love that DePaul pairs students up as “buddies” with the same or similar conditions. Knowing someone else who lives with the same illness as you is probably the greatest resource any of us have. It affirms your pain and feelings. Plus you can share with each other what works for you, what things to avoid, and how to cope in general.
- Counseling. This could also be student – to – student. We can go to the doctor when we get very ill, but doctors can do little for the many emotional aspects of illness. It is so overwhelming to feel sick all the time, and sometimes you just break down. Finding someone to just listen and care is difficult. We’re not asking to be cured – for most of us, that’s out of the question. But to just say “I’m tired. I’m sad. I’m beaten down and worn out and I don’t know how to keep going,” is really, really important. Expressing these feelings is much better than stuffing them deep down inside or worse, trying to self medicate them away with alcohol or drugs.
- Seminars. At UNT, the graduate school hosts guest speakers all year long who give free talks about study skills, time management, and general support for graduate students. I think that if the ODA hosted talks on chronic pain, gastrointestinal illness, living with something “incurable,” etc., you’d have a lot of takers. I know I would have gone to talks like that. They would probably be quite similar to what the grad school does – students with chronic illness need to learn a specialized kind of time management and study skills. If you need to get the ball rolling, I’m available and would love to give a talk. In fact, whatever state or country you’re in, I bet I know a health activist near you who would be a great guest speaker.
2. TEACHER TRAINING. I talked in depth about the problems with teacher training now, so I won’t dwell on that. Here are my ideas on opportunities to train teachers on caring for a student with chronic illness.
- Teaching Excellence Seminar, and other teacher training programs that UNT and CLEAR already host. Get rid of the funny fake illness talk you do. Instead, be realistic. Yes, some students will try to scam the system, but I believe the majority of students are not. Students pay to be in college – if they’re out sick, odds are it’s true or that there’s another good reason. Faking sick is a big problem in schools, but why do it? I think very few are Ferris Buellering. If they’re not really sick, there could be some emotional problem or financial problem, even a legal problem. Be the kind of teacher students are honest with. In school, I was labeled as one of the lazy ones. I’m sure I seemed lazy. I was smart, but sometimes just fell off the grid. Sometimes just didn’t get stuff turned in. Sometimes seemed half asleep in class. But if I just didn’t care, why would I pay thousands of dollars to keep coming back? I tried to explain myself, but that only seemed to make things worse. I think teachers should be trained to never assume a student is “just lazy.” Find out what the real problem is.
- During enrollment, I think there should be an optional section where students can say if they have a diagnosed chronic illness, physical or mental, for statistic purposes. Then, they can also choose to have their professors sent a packet or pamphlet on their specific illness, and whether they want it to say their name or just “One or more of your students has _______.” This is a great awareness opportunity. Professors can learn about specific conditions just for their general awareness, and hopefully it will make them think differently about any students they think are “lazy.”
3. LISTEN. I may have had a pretty crummy experience when I was in school, but I feel like UNT is on the road to redemption. They don’t have to listen to me, I graduated over a year ago. I don’t matter anymore. But they still commented, emailed, and arranged a call to discuss my experience and what I think should change. I wish that my college self had thought to search for “the bigger fish,” but at the time Mr. Sleazy seemed like the biggest fish around – and a dead end. I’m glad the big guys found me and expressed their concern.
“I want to assure you your voice has been heard.” – That’s what Dan said to me at the close of our call, and that’s what all offices everywhere should say when any student comes to them. Really assure us you’re listening and you want what we want. Put us on the same team. Be a friend.
Dan loved the idea of student mentorship. He said he’s worked with many other programs, including the Student Money Management center, to set up student to student support networks. I LOVED the money management center when I was in school. I know that sounds weird. But they had so many programs and events that I went – and that’s saying something. I don’t like math or numbers, and I don’t like socializing, but I went to money management student events. That’s how fun they were. I’m really excited that the ODA has this guy now. I think the student mentorships are definitely going to happen, and the guest speakers are a real possibility as well.
Dan was also honest, saying that the professor side of things is more complex. With FERPA laws and other privacy laws, disclosing illness in the enrollment process may not be possible. And of course, the scammers trying to get an easy ride through disability accommodation pose a big problem as well. It’s extremely difficult, from a legal aspect, to sort through the fakers and the those who truly need help. It’s not all kumbaya and group hugs – things aren’t perfect. But they’re changing, and changing for the better.
Making a difference at UNT was one of my biggest goals for this blog. I put posters all over campus, and I did my best to instigate change. It took a long time, but I’m so so happy that over a year after graduation, I still had the opportunity to make things right.
One of my closest friends has been saying “why don’t YOU work there?” or “why don’t YOU set up a program at schools or hospitals to support people?” and…I really want to. I’ve always been a writer and I’ve always loved film. I couldn’t imagine myself doing anything else with my life. I became a “health activist” because I felt like I had to. I couldn’t not. But that didn’t mean I liked it.
Over the past few years, I’ve become more passionate about health activism than I ever expected. I could see pursuing a career in it. It’s shocking and wonderful. I look in the mirror and think “Who is that person?! ….I like her.”
Never give up! You can make a difference.