This past Friday I had the opportunity to touch hearts. Well, in all honesty, I want it to be my life's work. I had the privilege of speaking to first year medical students about patients with special needs at the Rehabilitation Institute of Chicago. This was part of my independent study which is all about building my portfolio as a public speaker. Deatra, the faculty advisor for my independent study was there along with my parents. I have such great respect for Deatra, otherwise known as Dr. Sullivan-Morgan. She has a physical disability and I've never had a professor or any authority figure with a disability so the experience has been amazing. Anyway, here is my speech to the first year medical students.
First, I want to thank RIC for making this possible. I think you are such an important group to understand what people with disabilities face. If you are not educated, then who is expected to be? You have a responsibility, in my eyes, because you work with people who expect you to understand. Before I dive in, I’ll tell you about myself. I am a junior at Elmhurst College and I am majoring in communication. My visit here is part of my independent study. As for my disability, I have athetoid cerebral palsy, and three different movement disorders, including dystonia. I’m going to talk about patients with special needs.
Special needs patients go to you, like average patients, essentially, when we’re having a crisis which is when we are pretty vulnerable. I am going to share my most recent trip to the doctor. I had a kidney stone in January and I was in a great deal of pain and I just wanted to feel relief. I was vulnerable because of several reasons. I was in a hospital bed, meaning that I could not use my DynaVox, which is my voice. Due to that fact, my parents were my voice which certainly is not the same as having my augmentative communication device. The second reason I was vulnerable was my family and I didn’t know what to expect. We did not know what worked and what did not. That was really hard for my family and me. The doctors did do their best to tell us what to expect however, looking back they could have had empathy. They could have asked specific questions about my condition even that would have made me feel better. That is why I started with this story; you’re going to be in many situations, not identical, but similar situations. I decided to focus on how you treat a caregiver, our everyday lives, and, the issue of privacy.
Most of the time, caregivers or parents will come to the doctor appointment. If it is a parent there, and the patient is a child or cognitively impaired adult, let them in because they need to know obviously. My parents still come and I don’t mind at all. However, in about five or six years, I may feel comfortable going to a doctor appointment with just a caregiver. Now, that is when you may have to ask the patient, if it’s OK for the caregiver to come in, or not. If not, that should absolutely be respected. What a doctor and a patient talk about is incredibly private. That shouldn’t be different whether the patient is able bodied or not. If the patient wants the caregiver to be in there, I have come up with general guidelines to follow. First, greet the patient before the caregiver. The patient is the one who requires your attention; the caregiver really should come second. I know from experience it is very annoying when doctors only would talk to my mom and dad. Even when it’s a young child, acknowledge them. But, do greet the caregiver after the patient. After you greet them and the appointment is moving along, you may want to ask if the patient had questions before they came to the appointment. If the patient uses a DynaVox or any augment communication system, they will probably have pre programmed questions ready for you. However, you may bring something up that solicits an impromptu question. You’re going to have to wait for the patient to type. We take a long time but we deserve our questions to be answered. Now, in this room, you’re nodding your heads like, of course I’ll wait, but if it’s a busy day and March madness is waiting for you at home, it is going to be so tempting to look to the caregiver and ask, what is he or she typing? Please don’t do that. It’s disrespectful and not respecting the patients independence. They worked hard to know how to use their devices, you’re their doctor, encourage their independence! On the flip side, the caregiver may have questions and that is appropriate. When you answer these questions, make sure when you answer your also looking at the patient. Caregivers or personal attendants do more than just go to the doctor with us.
I am going to talk about the role caregivers play in everyday life. It’s a fact, if Kim, my personal attendant Monday through Friday mornings, doesn’t come; I’m not going to get up out of bed, period. My personal attendants come for bedtime and mealtime. For mealtime, my assistants feed me. I cannot feed myself or give myself a drink. So, I’m incredibly dependent on my assistants. For bedtime, they take me to the bathroom, brush my teeth, apply my face wash, and put on my pajamas. Yes, it’s true, I cannot dress myself. They have to undo my bra, change my underwear, everything that, so called normal people take completely for granted. That is my next point, modesty.
I do not have an inch of modesty in my life. I need help showering, dressing, and anything that is personal care. I remember buying a couple of pair of underwear online. And of course, my assistant and I went to the mail room which is in our student union. My assistant wanted to open it up, like, oh sweetheart what did you get in the mail? I would not let her open it. She obviously understood my absolute panic when she saw what it was back in my dorm room. That is kind of the funny part of my story. The serious part of my story is I had to ask her to help me try them on. And, she of course was very respectful. But I couldn’t help but think, this is not what she woke up wanting to do but in the same breath, I would love to try my own underwear on. Modesty has a lot to do with privacy. I almost have no privacy. Let’s say I get a letter in the mail from my nana, and I want to put it someplace special and private, I can put it someplace private but another person is going to know where it is. This is where I find I have to force perspective on myself. My assistant is not going to go home and tell her boyfriend; Hannah got a letter from her nana today and put it in her jewelry box. No. It is not that interesting. And for my assistants, it is having a real, true respect for me so that we can have that trusting relationship. Now, being doctors, or almost doctors, it’s important to have trusting relationship with your patient. Now, you have probably heard that millions of times. But I’m going to go a little deeper and tell you, how. How to get that trusting relationship with patients. Respect. Being respectful of personal space, for example, if you want to get something out of a woman’s purse, ask first. May I open your purse? I highly advise you start with, may, because she can’t stop you. Of course you can, but get her permission. Same thing goes for men and wallets. If you ask, may I take that out of your purse, it has a completely different feel to it. Respect is everything.
At this point in the presentation, you must be wondering if I think all of this is worth it. The answer day in and day out is, absolutely without a doubt. Yes, it gets tiresome and hard but life is never boring. There is always something going on to thoroughly keep me motivated and laughing. And that is the best part of this life I choose to live. I have an incredible amount of independence. I have learned how to really and truly advocate for myself. I have made mistakes and have quickly learned from them. I get an education. I get the privilege of getting a degree. I think so many of us take going to college for granted and in no way am I saying, I wake up in the morning and just cannot wait to get to class, my first thought usually is, I want to sleep more. However, I do realize that I am incredibly blessed to be physically and cognitively able to attend college classes. And also, I have the opportunity to make friends. I didn’t really have friends before college, and now I have so many thoughtful and incredible friends that I could not imagine my life without. My life, it pretty much fits the definition of impossible and I love it!
Patients with special needs won’t see you every day. You’re our doctor, we want to come to you in our most vulnerable moments and when we want to know how we are doing. In vulnerable moments, we want empathy and understanding, when we’re in your office, we want your patience, and we also want you to understand that we deserve privacy too. I would like to thank RIC again for your time and I would love some questions.
I hope you enjoyed reading that. It was a thrill to present!
Unfortunately, I must end on a negative note which I hate doing in a post. I have received notice that I am on the waiting list for my beloved Camp Courage. I am number 16. I literally feel sick to my stomach at the idea of not going. See, they usually offer three adult sessions and due to financial reasons they only have one adult session. My heart is breaking as I write this. I'm literally on the verge of tears. I need Camp Courage in so many ways. It gives me hope and energy to live in an able bodied world. Readers, I try not to ask for much from you but I would appreciate it if you could say a little prayer or simply keep me in your thoughts. Thank you.
The presentation and Camp have one thing in common and that is the opportunity to touch people. That is all I want to do in this life. Touch hearts...
XOXO,
Hannah!
