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Ablism In Healthcare

It's still April 30 in the US, but it's 1 May in the UK where many other Blogging Against Disablism Day participants are. So I'm posting this now to make it easier on others. Because of the length of this post, the rest of the post on ablism and healthcare is after the cut.

Ablism In Healthcare


Going to the doctor is almost sure to raise many people's blood pressure. It's hard to want to go where you know there are needles and all sorts of other things that will ultimately help you, but may be unpleasant at the time. If it's a new doctor to you, you're probably going to be worrying about how his or her bedside manner is and whether she or he will take your symptoms seriously. But if you have a disability, you can add several other concerns to the list. The problem is, whether intentional or unintentional, ablism happens in the medical community.


I've dealt with chronic pain for three years. Reflex sympathetic dystrophy combined with a flexible foot causing several tendon problems have baffled several doctors as to what may be wrong with me or what they can do. Consequently, I've experienced more than a normal teen's amount of visits to the doctor. What follows is a little of what I've seen in medicinal situations relating to a patient's experience when that patient happens to have a disability. Mainly, these three problem areas fall under the categories of missing confidentiality, missing the point and missing access. After seeing the nasty stuff, we'll try to look at what can be done to change it.


Missing Confidentiality


Let's start with scheduling the first visit. I pick up the phone and dial the office. Most likely, I get an automated menu and get to choose which group of people I want to talk to. I push the corresponding button and am put through to the right person, well, okay, first I'm put on hold, but you get the picture. I answer the questions I need to about reason for visit, name, address and phone number. The person scheduling my appointment offers to give me directions and the call is over. No problem right? Not necessarily; the directions probably aren't much help if they tell me to look for the green roof. But it's possible to ask lots of questions and make my way to the doctor.


Having scheduled the appointment and marked it down in my planner, I make arrangements for transportation to the office. Most of the time, they're not on bus lines or there's something unsafe about the route to get there, so my Mom or Dad gets to come with me. Once I arrive, I check in with the receptionist. Remember that this is my first visit? Here's where the fun starts. I get a stack of forms to fill out. These forms are in print, remember? Since Mom's with me, she gets to fill out the information for me. It's just assumed that this is okay with me. What's the problem with this situation?


Mom and I sit down and start to fill out the form:


Name:
Address:
Phone number:
Emergency contact:
Birth date:
Please check any of the conditions you have:
High blood pressure
Heart disease
Diabetes ETC...
History:
Are you currently sexually active?
Do you take birth control?
Do you have an IUD?
Do you have any of the following STD's?
Have you ever taken any of the following street drugs?

Now do you see the problem? I've never had a situation where I needed to lie on this form, but let's say I'd been a bit less discriminating the weekend before. I now have to tell my mother this, even though I may not be ready or willing to. Leave all judgments as to whether I should tell her at the door because they're irrelevant. With all of the stuff about HIPA's protection of health information, I'm forced to reveal this to my mother and my health information is no longer between me and my doctor. Further, I'm filling this form out in the lobby. As quiet as I try to be, it's very possible that Joe across the narrow aisle just heard about any of these things. How honest do you really expect me to be about anything if I'm concerned about this information getting out?


I've been put in some awkward positions because of this. I don't really feel comfortable answering questionaires about my mental or physical health in the lobby. There was the time I had to fill out a depression screening; I didn't know who was around. This was in my college's health center, so for all I knew, a professor I might end up working with could be in the room. While I know and believe that depression is not something to be ashamed of, I think that any of said issues should remain private unless I choose to disclose them. Some questions could be damaging to a student's relationship with a professor if taken out of context. Another time, Mom and I were filling out a form which asked about drug habits. One of the questions asked about whether I had a DUI; we both started laughing. That was slightly awkward.


Missing The Point


Once I'm back in the doctor's examining room, I sometimes face another form of ablism. Luckily, I've been able to minimize my experiences of this sort by finding doctors I feel comfortable with and who treat me with respect. Still, I have experienced this before and will probably experience it again. My chief health complaint has been my foot for three years. My visual impairment (until recently) was very stable and should be a non-issue. But sometimes doctors seem to only focus on my vision issues. Most of the questions seem to be about how much I can see or how I do some random task. Sometimes I'm willing to be helpful and educate anyone who asks, but if my doctor has limited time with me, how do I know that I'm getting the best care possible and that my care isn't being sacrificed to learning more about my vision? If 10 minutes are spent on my blindness (which I'm not even requesting medical care for), and five minutes are spent on my pain and I don't even get to ask all my questions, then I would say my care has been sacrificed. Like I said, this hasn't happened very recently.


Missing Access


Finally, I've gotten through the paperwork and the medical interview, but there are more issues to deal with. It would take a whole book to write about all of them, but to simplify this blog post and write about something I actually understand, I'm going to focus on only one more. Now that my doctor and I have made a plan for treatment, it is my duty to participate in the plan. I can't do that effectively, however, without access to information. It's too easy to hand me a piece of paper and have me make a follow-up appointment in four weeks. Usually, someone reads the paper to me, and if I'm lucky, I get a demonstration of any new procedures I'm supposed to perform. But what if I can't remember what side effects to watch out for? Why does it have to be my mom's responsibility to read the information off the sheet for me? Since these papers usually contain handwriting, it's difficult to have an OCR program convert them into computerized text. This is definitely not the fault of the doctors and nurses I see. They try their best to help me with the information. But this is where technology could play a significant role in the process. Ah, but I'm getting ahead of myself.


If all of this is making your head spin, or you're part of the healthcare industry and wondering if I'm out to get you, don't worry. I don't believe in writing two pages of criticism and not giving suggestions. Let's look at each situation with a different set of eyes.


Keeping It to Ourselves


There are several ways to solve the problem of paperwork. I don't know that we're here yet, but eventually, hopefully, we'll see web-based systems for scheduling appointments. I think it would solve more than one problem to allow patients to fill out paperwork before they come to the doctor. First, from an ablism perspective, as long as some basic standards are followed, a screen reader or magnification program can access the information. Now, that information will stay confidential. I don't know as much about programs to aid people with impairments that affect their hands, but I know they exist. Someone with this type of impairment could fill out their paperwork this way as well. This would have benefits for others without disabilities as well. Patients could take their time answering the questions and give the needed information more accurately and clearly. Doctors could have access to the information in a more readable format (no struggling to read a patient's handwriting). In the meantime, people that schedule appointments could ask if the patient will need any accommodations. This is where you find out about sign language interpreters, interpreters for other languages and issues accessing print information. It's an easy opening which then allows for time to figure out how to handle any issues that may come up. Could work be delegated slightly differently so that someone could read the form to the visually-impaired person? If the patient is willing to have someone who is with them fill out the paperwork, could they be given a more private place to work?


People First, Disabilities Later


With the doctor spending too much time on my disability, it may help for me to explain more about what I mean. I don't mind some questions about my disability; I understand curiosity and that there are reasons for asking these questions. I do mind my disability being the focus on an appointment that has nothing to do with my disability. I also understand that sometimes things that don't seem related to me may be huge medically. A short explanation that tells me that questions could actually be related to my current medical concern would go a long way to easing my fears that my concern isn't being addressed. If you're trying to make conversation, remember that I'm much more than a disability. I have many of the same experiences as any other college student. What would you ask about if I didn't have a disability? Remember, too, that if I'm seeing you for an ear ache that makes me nauseous, I'm probably more concerned about not throwing up in the next two seconds than I am about telling you about my Guide Dog.


A Little Creativity Goes A Long Way


In regards to the difficulties I have accessing information I'm given, there are creative ways to handle it. As more systems move to electronic information, I hope there will be more ways to access that information. Instead of handing me a printed copy of the medical information, maybe it could be emailed to me. Maybe it's already online at a web address I can access when I get home. Or maybe there could be some agreements between organizations that braille material for people with visual impairments and medical establishments. Sometimes, these agencies will email information that was previously in print. That saves money on paper. This is where creativity comes into play.


The Method


Lastly, a few words about methodology. If I've learned anything from psychology and sociology, I've learned that it's important to evaluate possible flaws or short-comings in method or research. The main short-coming of this information is that it doesn't address nearly enough of the problems faced by people with disabilities. I can only speak to my own experiences. I don't know nearly enough about other disabilities, ablism or healthcare. I hope you'll take the time to read other blogs, read other stories and learn more. I also hope you'll share your stories with me.


Context


It's important to keep in mind the context in which I offer all of the above remarks. I talked about barriers to access, not necessarily the attitudes which foster them. Women in the feminist movement had to address both the attitudes and the access barriers they faced. I chose to address the barriers to access because while I have my own theories about what attitudes foster ablism, I can't speak for others. My hope in writing this essay was not to be the end all answer to ablism in healthcare or to address the attitudes which foster it. My goal was to point out a few areas where access is unfairly impaired on the basis of disability. My other hope is that if you're part of the healthcare community, you'll think about these barriers and examine your attitudes toward disability. Hopefully, I've done what I set out to do. Please share comments about your experiences with me.



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Comments

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kittytech
May. 1st, 2006 03:05 am (UTC)
This was an awesome post. I could totally relate to these situations! I'm a casual drinker, and like to have some drinks with friends. however, my parents don't know that I drink, and even though I'm old enough to make my own decissions and live many states away from them, they wouldn't approve if they knew that I drank. I was having some exploratory surgery about 4 years ago and my parents came from Idaho to spend about a week with me after the surgery because I couldn't do anything on my own, including stairs, getting in and out of bed, things like that. Of course, because of insurance and the fact that hospitals don't really like to keep people very long these days I was sent home the day after surgery with a severe bladder infection on top of everything else. Long story. Anyway though, the point I'm working toward is that my dad was helping me fill out my paperwork before the surgery, and when the question about alcohol came up I chose to take the easy way out and say no to the question rather than deal with the repercussions that I knew I'd have to deal with if I admitted to having the occasional drink. I all ready got the "alcohol leads to drugs" lecture when I was nineteen, and despite what he told me, I've never touched any sort of street drug and have no plans to do so. That was probably the only time I ever had to lie on a form, and I felt totally uncomfortable with it. Fortunately though it didn't seem to make all that much difference one way or another.

One other suggestion for filling out forms, although your suggestion is all-around a much better solution. When I went in for my sleep apnea tests, all the forms were sent to me in the mail. This pretty much was pointless the first time since I thought all the paperwork was map information so didn't even bother scanning it. The second time though I was able to get someone to help me fill it out ahead of time. This isn't a perfect solution either though since you're still having to give people personal information, but at least it wasn't in a crowded waiting room. For my first test, one of the attendants helped me fill out the forms, but it was done in the privacy of my own room so I didn't have to worry about anyone overhearing. Then in the morning I had help to fill out the exit questionaires. In addition to helping me with the paperwork, they offered to have someone meet me at the door of the hospital and take me up to the sleep clinic. This was the first time I'd ever had anyone offer that kind of help and I thought it was great.

I've had my share of bad experiences, but it's always nice to have some good ones.
puppybraille
May. 1st, 2006 03:31 am (UTC)
Yeah, the good stories are always nic to hear. I'm thinking I want to continue and write a post on the good stuff as well. Thanks for the suggestion. I've actually gotten forms before the appointment and it works okay, but there's still the issue of finding someone to fill out the form who is trustworthy and not a parent (smile).
(Anonymous)
Jun. 24th, 2007 11:04 pm (UTC)
Where'd you gone, I missed you so...
MESSAGE
expanding_soul
Jul. 9th, 2008 06:33 pm (UTC)
I found this blog entry through a google search on ablism because of my own struggles at the moment to get over my huge frustrations with mental illness and people who have mental illness.

thank you for making this post. it has really opened my eyes, especially on the subject that I've been an ablist in recent days, even though I had my own struggle with a mental issue the past few years, and it boggles my mind how easily I slipped into being an ablist and discriminating against people with mental illnesses.

i really hope things have improved for you in the medical community.
sauravsahay
Sep. 23rd, 2009 03:33 am (UTC)
Nice
Interesting article, Thanks!
puppybraille
Sep. 23rd, 2009 12:44 pm (UTC)
Re: Nice
Thank you for commenting and for your complement. I'm wondering, just out of curiousity, how you came across this article? It always amazes me that people still find it, even several years later.
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