I gave a bit of a talk recently on what I viewed as the barriers to sexual health and education for people with disabilities, discovering that I have a lot of thoughts about the barriers not only to sexual health but to all levels of health care when one is disabled. These can vary from the difficulties in making appointments to waiting rooms where people who use wheelchairs are told to wait in the hallway.
Sexual health is something that weighs quite heavily on my mind. As we’ve highlighted here (and many other bloggers have highlighted elsewhere), people with disabilities, especially women, are vulnerable to sexual abuse.
Over the next few posts (the other two will be available next week), I wanted to highlight some the barriers I perceive in people with disabilities in getting access to sexual health-related care, and I encourage people of any gender, should they wish, to detail out their own struggles or successes in receiving sexual health care. I would remind commenters, though, that people do search and read comments, and if they wish to give their stories anonymously, that’s perfectly acceptable.
The two things I want to highlight today are getting an appointment, and getting into an appointment.
Over the past couple of months it’s been brought intimately home to me how difficult it can be to get a doctor’s appointment for any reason if you can’t use the phone. I’ve been unable to hear very well due to an ongoing ear infection, and Don has a frozen vocal cord, meaning he cannot speak much above a whisper. Trying to book an appointment to get my ear checked has been an effort in frustration: neither my GP nor the ENT clinic I was referred to have any indication of a way to book an appointment that doesn’t involve using the phone.
When I worked in Health Care I did receive relay calls. For those not familiar, d/Deaf or Hard of Hearing people can use relay calls where they use a TTY phone. They contact the relay center via TTY, and the relay center calls the person you wish to speak to. My understanding is that you then type what you want to say, and the relay operator repeats it to the person who you are talking to. They then type up everything the other person says. (The speaking person says “go ahead” when they want the text-part sent.)
[Interestingly, I only learned how to take Relay Calls when I worked in a call center for a major wireless company in the US. No one when I worked in health care discussed Relay Calls or how to handle them, although in my experience the operators were very kind and forthcoming with that information.]
However, phone issues are not limited in any way to people who may be able to take advantage of Relay Calls. Relay Calls are not appropriate for Don’s needs as someone with a frozen vocal cord, for one example. There are also people with audio processing disorders, people who have phone anxiety issues that make using the phone difficult, if not impossible. There are people whose phone-related issues are temporary rather than permanent and thus they don’t have the equipment available to take advantage of something like Relay Calls. These sorts of barriers to accessing health services, especially sexual health services, can cause people to just give up on the whole enterprise.
One solution to this would be for sexual health clinics and doctors offices to consider making people aware of alternative means of contacting them for appointments, be this via email or fax or even an online appointment booking service. While I have no doubt that these are available currently, I have never seen these services advertised. Certainly when trying to book my ear appointments I would have loved to have done it via email, since I couldn’t hear, which made making the appointment difficult.
Another seemingly simple problem that can be a barrier not only to any health service, but any building at all, is the dreaded Wheelchair Lift.
I mean, let’s pretend that every building you’d want to go to for health services was specifically wheelchair accessible (Note: This is not as true as one might imagine.) In many cases, this will mean a wheelchair lift has been added to one of the stairwells.
As many people who use wheelchairs can tell you, wheelchair access is often “in the back”. This can mean that you need to call ahead to let them know that you’ll be there in five or ten minutes and could someone be troubled to let you in? These doors are not always cleared of snow. The one for one of the buildings that Don’s had to enter doesn’t have a full sidewalk going up to it, so he has to deal with mud when it rains. It rains a lot in Halifax.
However, wheelchair lifts, bless them, do not really help a lot of people with other mobility-related disabilities. You can’t use a wheelchair lift if you use a cane. You can’t use it if you use a walker. Occasionally people in these situations will be allowed to use a chair and sit on it while the lift takes them up the flight of stairs, but this is not always something people are willing to do.
Again, these are physical barriers that prevent people with disabilities from accessing health services. They’re not deliberate, but they have long-term consequences that are easy to forget.
On relay calls, it may be useful to know that most Windows computers can stand in for the (no doubt expensive) TTY hardware; assuming the computer has a modem, it can be used with the “HyperTerminal” program to emulate a TTY console and successfully place relay calls. (I tried it myself once I realized it should be possible, in order to see if it worked — it did.) I don’t know whether it could replace a hardware TTY console, but I imagine it could serve as a good stopgap at the very least, especially for someone who doesn’t have an ongoing need and therefore perhaps can’t justify the purchase of a hardware TTY console.
HyperTerminal comes free with Windows XP and previous versions; Microsoft has “helpfully” removed the program from Windows Vista and newer versions — modems? telephone lines? how *old-fashioned*, dahling — but it’s probably available online from all sorts of places. (Such as here, which also has helpful information on how to set up HyperTerminal under Vista or Windows 7.
Also, here’s a page from the Australian National Relay Service on setting up HyperTerminal to work as a TTY; of course the phone number will need to be different, but other than that (and I’d recommend starting at 9600bps instead of 19200, which may be too fast for older equipment), it looks like it should work with relay services in the US as well.
Here’s hoping someone finds this helpful!
Depending on one’s geographical location, there are scores of companies providing relay services using internet (Skype-like, IM, &c &c &c). The magic Google string is I P hyphen R E L A Y.
Waiting times can pose significant barriers, especially when the issue is mental health-related. Often by the time I’ve harvested the energy to contact my provider, I’m already barely coping. “Our first appointment is in eight weeks” can send me over the edge.
The H1N1 epidemic was accompanied by ubiquitous containers of alcohol-based hand cleaners. They sprouted everywhere, but most particularly in health care facilities. The one brand that dominated my providers had a very pervasive scent, which meant using my rescue inhaler more and also wearing my N95 particulate mask.
When I use public transit to go to an appointment, I try to leave enough room to miss the early bus. I end up spending a lot of time in the waiting rooms! (I bring tea bags I like and something to read.)
Hear, hear on the phone issue. I have social anxiety, work in an open office, and am juggling frequent visits with several specialists, so it seems that I am constantly trying to make appointments without distrubing anybody, having unneeded details overheard by the whole office, or ending up sitting with my forehead on my knees trying to not pass out. And don’t get me started on phone tag.
The worst ones as those that lead you to believe that they will handle things over email (via a prominently placed email address or form on their website) and then email you back only to say “thank you for your email. we’d love to arrange an appointment. please call us at this number to make arrangements”. Who thinks this is the proper way to handle things? I got a new twist on it last week when a receptionist left me voice mail saying she was returning my phone call (you can’t tell the difference?!) and then a message that made it clear she’s read maybe half the email.
You’d think this would be a solved problem, technologically speaking, simply for the labor savings it could afford. Give patients a log in, let them flip through a calendar display of available appointments until they find one they like, reserve it for them, and send a reminder email a few days before the appointment. The bottleneck here is definitely on the part of the medical profession.
Just addressing the issue of using relay when you have impaired speech – info about speech to speech (STS) relay (in the US) is available at http://www.fcc.gov/cgb/consumerfacts/speechtospeech.html
At least at some Planned Parenthood locations, it is possible to do some or all of the appointment scheduling work online through their website. With my anxiety disorder making it pretty much impossible for me to make non-social phone calls, I would not have been able to make an appointment at all without this. The only phone call I remember getting was an appointment reminder, which I didn’t have to actually answer.
I know I’ve mentioned it before, but my state has a separate Medicaid plan for pregnant women, meaning a lot of gynecologists will take it but not regular Medicaid. I’m not sure what they think they’re doing sometimes. I had the hardest time getting anywhere for what I thought was a serious condition a couple of years ago. There was a clinic that would see me, but they had a surgery center attached that wouldn’t. They kept insisting I try to find a gynecologist near a particular hospital, but I tried all of them and none would see me. I got stuck seeing a really terrible doctor in another city. At the very least, he determined I didn’t need surgery, but if something happens and I do, I could be out of luck.
Maybe a new clinic’s opened up since then, but considering I had a similar problem before only to have the place I visited shut down, I’m not very confident.
This this this to the telephone issues.
I have a huge amount of telephone(/voicemail) anxiety for many reasons. If I can email someone, I’m fine. If I have to call someone, it’s incredibly difficult. The difference between having an option to email (or drop by the office, even) and having to call can be the difference between me getting timely healthcare or not.
We have talked about this a bit over at GimpGirl. And at Sex:Tech conference there were people from Planned Parenthood who had questions about how to better serve women with disabilities – I don’t know what they ended up doing about it though. The issues you mention would be a good first step – can people even make appointments, or find out easily what accessibility accommodations and barriers a clinic has? It would be nice to know about accessible exam tables, for example!
But clinics might do well to improve their information about getting to the clinic, getting into it, and other logistics. It boggles my mind sometimes how people think putting in a lift or a ramp fixes everything. I’ve been up a lot of ramps to locked doors, or doors that go into a room so small it would be impossible to turn a chair!