I find it much easier to write product posts, which in a way are more impersonal, but I do also want to have some opinion pieces on the blog that tackle issues around accessibility and the challenges and solutions I’ve found as someone with a visual impairment.
Healthcare isn’t something that I really think about much. I do have a health condition that I need to be aware of, but generally I’m reasonably healthy and I haven’t spent much time in hospitals or at the doctor’s.
Still, a recent trip to the hospital got me thinking about the accessibility of healthcare for people with a visual impairment. These experiences are my own, and this isn’t an investigative piece to represent the views of other blind people.
I think the worst experience I had was when I was about 14 or 15. I went to the doctor or nurse, I can’t even remember now, for a general check-up.
Doctor: Do you need contraceptives?
Doctor: Oh, no, I suppose it would be more difficult for you.
What exactly? Surely not the physical act! Or did she mean it would be more difficult for me to find someone who would want to be in a relationship with me? I was incensed!
“No”, I said, in my “you’re-tedious-stop-wasting-my-time” voice, with the disdain that only a teenage girl can pull off. “I just don’t need them”.
I have never usually held back, but at that moment I didn’t know what to say. I wish I had said more. I certainly would now, but you know how it is when something takes you by surprise and you’re lost for words. Still, that could have completely destroyed someone’s self-confidence if it had happened to someone else. I was just annoyed, but I still remember it 20 years later. You know the saying – people may forget what you did, they may forget what you said, but they will remember how you made them feel.
I don’t think any kind of training could have fixed that. Any reasonable person would know that’s not a cool thing to say.
Just to clarify, I am not complaining about teenagers being offered contraceptives, but those who don’t need them shouldn’t have to justify why not!
However that was a long time ago now. The care that I received in the hospital recently was great. Everyone I met explained what they were doing, and when I needed to go somewhere else, people just guided me there. Prior to the operation, there were forms that needed to be filled out by hand, but someone was available to do that.
I don’t have a guide dog now, but when I did and I was visiting someone in a hospice, nobody tried to prevent my dog from coming in. I think they were happy to see her and a waggy tail was welcome in a place where people were going through a sad and difficult time!
Technology makes it easy for things to be accessible. For example, my doctor’s surgery and my dentist send out appointment reminders by text (the dentist does email as well). This means that the information is automatically accessible to me because I can read it with the speech software on my phone or laptop. Access to the internet also makes information available that I wouldn’t otherwise be able to access without help, and this helps in terms of being able to read up about anything related to my health, animal health, or the research being carried out into sight restoration. More about that in another post.
In terms of patient letters, I did have to ask for it specifically, but I got the preparation letter about the operation and the surgeon’s letter by email. This wasn’t standard practice (it would save so many trees if it were), but I just had to request them so that I could have them in a format I could read. It would be helpful if this could be extended to all correspondence, not just the letters that you are anticipating and can request by email. I take it for granted that my business is paperless and it will take a while before large organisations catch up!
When I moved to a new area, shopping around proved to be the best way to find a new dentist. I initially registered with one practice, but I found the guy so dismissive and unhelpful, that I decided not to let him loose on my chompers. I don’t think that had anything to do with visual impairment though, just poor customer service. Still, I’m glad it happened, because I then went somewhere much better. My dentist is kind and helpful, and she shows me what she is going to do, the tools that she is going to use on me, and the plaster moulds of my teeth so I can feel the difference between how they were and how they would be after the treatment.
My eye condition is stable, but I do have check-ups at the eye hospital. The consultants are great, but to be honest some of my more frustrating experiences have been there whilst going through the preliminaries. If I can’t see you at all, then it makes no sense to make me do the “how many fingers can you see” exercises. Fortunately one of the doctors has put a note on my record so I don’t have to do that, but some more initiative at the beginning would have been nice! If I can’t make my eyes look in a certain direction because I have nothing to focus on, repeating the instruction won’t help. I understood the first time! I just can’t do it! I do find these visits kind of tiring, but they are worth it because at the end you get to speak to someone who knows a lot about your eye condition and current research.
Generally I attend appointments on my own, but I did take my partner in once because he had some pictures of an allergic reaction I’d experienced. I also took him to the appointments about my operation for moral support. Most of the time it was fine, and people still addressed me because I was the patient, but I think many people with disabilities know what a pain it is when people start talking to the person with you, when they should be talking directly to you. We don’t go along with that, and they soon learn that they need to speak to me!
Perhaps this is something that people could learn in some kind of awareness training, although as someone who has grown up in a world where most people I meet, including my teachers, colleagues, and new friends had never met another blind person before meeting me, I think most people are smarter than we give them credit for, and I don’t believe that awareness training necessarily solves every potential problem. If everyone followed the rules of not making assumptions about people, asking questions when they’re not sure, and talking directly to the person, whether or not they have anyone with them, that would be a great start! I often feel more comfortable with people who’ve had no experience of visual impairment, than those who have been working in the field for so long that they think everyone is the same in terms of how they do or perceive things.
The systems used in some surgeries for letting people know when it’s their turn are not accessible. I mean the ones where you have to wait for your number to come up on the screen. I can’t see those, so in those cases I asked someone from reception to let me know when it was my turn. I guess there is the risk that you could be forgotten, but this never happened to me and my current surgery doesn’t do that – you just have to wait for your name to be called.
I am very happy about the ruling that requires medication to have Braille labels. This makes life so much easier for me to know what things are without having to label them myself. Hopefully we won’t lose that when we leave the EU – that would definitely be a step backwards in terms of accessibility to information. The information leaflet is not in Braille, but as long as I know the name of the medication, I can go online to look for the leaflet.
Overall I’d say my experience of the healthcare system has been good. I think that people with disabilities have a responsibility to be approachable and explain what they need or what would be helpful, rather than expecting other people to know – because seriously, how can they? Everyone is different.
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