You know those guides for telling you what to do when you meet a person with x, y, or z disability? Well, maybe you don’t, but please just take my word on this one. They’re full of crap. If you follow them, I almost guarantee (I have learned I can’t guarantee anything) you’ll wind up alienating the person instead of interacting with them. These guides actually really insult the intelligence of the people reading them, telling them they’re not possibly smart enough to figure out how to negotiate a possibly unfamiliar situation (I.E. talking to or helping a disabled person). It also forces them into the role of automaton as they struggle to remember what they’ve learned.
Actually, it occurs to me that guides for helping disabled people are just a further way our society reinforces the notion that we’re better off memorizing rules than developing our skills of reasoning, communication, and compassionate intuition.
Still don’t know what I’m talking about? Consider yourself lucky. Or take a look at these responses to such guidelines.
How to Talk to Normal People: A Guide for the Rest of Us
If you laugh while reading through these, as I did, that’s more than okay; they’re pretty ridiculous and I think the best way to deal with ridiculousness is to laugh. Sadly, this isn’t too far off the mark from what those of us with disabilities experience. I have personally served as Christmas angel or other ethereally inspirational being to many strangers, people who decided they knew all about me, and that I was of superior moral character, all based on my having a visible disability.
Thing is: We who have disabilities aren’t one-dimensional; our disability might be the most noticeable thing about us to others, but it is, for most of us most of the time, not what we notice most about ourselves. While it, depending on the nature of the disability, might impact how we run our day-to-day lives, it’s just one of many things we consider or think about. For example, someone who uses a wheelchair might have to plan the safest, most accessible route to the local knitting shop, or arrange for accessible transportation, or find an accessible knitting shop in the first place, but their focus is going to be on getting to that knitting shop to teach or take a class, or to buy goods with which to make holiday gifts or stock up for their custom-designed shawl-knitting business. The special arrangements they need to make to get to the shop don’t define who they are. Using a wheelchair and needing to find an accessible way to get to the shop is just one aspect of that person’s identity as a fibre artist, small business owner, yarn geek, or whatever their relationship to knitting happens to be. Once they get there, an employee or another customer engages our imaginary yarn geek in a question-and-answer session about their disability, that’s likely going to be a huge disconnect for them, since they’re not there as a disabled person, but as a yarn geek.
There’s no one thing that a particular kind of disability (or disability in general) can tell us about the person or people who are disabled in that way, about what they need and want access-wise, or really anything concrete about them at all. I heard a story once, from a blind guy who was sitting in on an accessibility training at his local library. The person giving the training suggested that if someone with a disability is in line at the desk to ask a question or get assistance, and there are others in line behind them, that the library worker should ask the person with the disability to wait until they’ve served the other patrons, regardless of their position in line. This blind guy spoke up, reciting his weekly schedule, and asked if the folks their thought that he had time to give up his place in line.
The accessibility trainer was operating under a few assumptions. 1. The person with a disability is primarily a person with a disability, not necessarily a busy parent, entrepreneur, community volunteer, etc. Following from that, they assumed it’s not unreasonable to ask a “person with a disability” to do something you wouldn’t ask another “person” to do. 2. That a person with a disability is necessarily going to need more help and take longer to serve than a person with no visible disability. This may or may not be true, but generally will depend on what they need, not on the fact that they have a disability. If their question requires extensive research, or a prolonged foray among the stacks, then certainly, they might be asked to wait, or to make an appointment to come back, but so would any not-visibly-disabled person.
In writing this post, and preparing the presentation I’ll be giving this weekend at Catalyst Con, I’ve gone back and forth with myself a lot on whether to give specific guidance or suggestions on appropriate protocol when interacting with disabled people. There really cannot be one protocol, for disability in general and for disabilities specifically.
The No. 1 rule really is, of course, just to treat us like human beings. If you wouldn’t walk up to a not-visibly-disabled person and ask how they got dressed in the morning, or how they can possibly take care of their child, don’t do it to someone with a visible disability. If you wouldn’t touch a not-visibly-disabled person without asking them, then don’t do that to a visibly disabled person. All of this is pretty obvious, yes?
While I would like to be able to leave it at that, I don’t think it’s ultimately helpful to do so.
I think that disability is something pretty foreign and frightening to a lot of people on a gut level. Some of this is because people find the prospect of losing any sort of functionality in their day-to-day life to be terrifying. There’s a cultural element too, as there aren’t a lot of good models in media for relating to people with disabilities, both around our sameness and around our difference. Come to that, there aren’t generally a lot of representations of people with disability in media sources, and what representations there are tend to hold us up as either inspiring (I wasn’t joking about that Christmas angel bit) or helpless. Even for those who recognize the one-dimensionality of these representations, I think they can still affect people on an emotional level, making disability seem foreign and difficult to understand.
The harder people try to understand disability, the more separated they become from the recollection that we’re just human beings like everyone else.
So, I present to you a small list of suggestions. While these read like dos and don’ts, they’re intended more as thought starters, and as “things you may not have thought of because they’re not part of what you encounter in everyday life. Honestly, I thought this list would be a lot longer than it ended up being, but boiling down the basics ended up being pretty simple.
Mobility Devices (canes, crutches, wheelchairs, service dogs, and so on): Do not touch someone’s mobility device without their express say-so. Our mobility devices are there to help us navigate, not for you to navigate for us. Grabbing someone’s service dog, or cane, or wheelchair, or walker, is akin to grabbing a car’s steering wheel out of the driver’s hands, and, depending on the mobility aid, could be akin to grabbing the steering wheel from a driver and kicking an ambulating person’s feet out from under them. Unless someone explicitly indicates that they want you to push their chair, or hold their cane for them, or otherwise interact with their mobility device to be helpful to them, it’s hands-off!
Yes, this also goes for guide or other service dogs. I don’t care how winsome those eyes are, it’s always best to ask before you pet and respect whatever answer you get. Touching someone’s assistance animal without permission is like touching them or their small child without permission.
“Can I pet your dog?” also needs to not be the first question you ask someone upon meeting them.
Communication: Small talk is the same whether we have a disability or not. Small talk (whether through speaking or other forms of communication) is about shared topics. Maybe you feel like you don’t know what similairities you have with a person with x, y, or z disability that makes their life and how they experience it different from yours. Really, though, the things you’d talk about with any stranger–the weather, latest movies, anything related to the space you’re in (if at school, questions or comments about classes are always appropriate)—is suitable. Disabled people are not that different from you, and while our disability might be of interest to you, trust me when I say that to us it’s more boring than talking about the weather!
If you’re talking with the person who has the disability, always look at them. If you’re communicating with them through a sign language interpreter, still look at them. Think of the interpreter is useful furniture. Their job is just to interpret what you’re saying, and, if the deaf or hard-of-hearing person doesn’t speak your language, to also “voice” their responses. That’s basically it. Here’s a great Wiki on communicating with a Deaf person through an interpreter.
You want to look at the person or people you’re talking to even if they can’t look at or make eye contact with you; for example, if the person is blind, or is physically unable to move their body in such a way as to look at you. Speaking as someone who can’t see, it really does make a difference when someone looks at me while talking with me, not out over my head, or at anyone I might have with me.
Our family and friends generally don’t speak for us, unless we ask them too. Even if a family member, friend, or personal support attendant (someone employed to help a disabled person do things they need help doing) voices for a person with a disability, or appears to be taking charge of the disabled person they’re with, it’s still courteous and humanizing to address the person. For example, if you want to know what someone wants for lunch, ask them. Regardless of who responds, it’s still so much nicer to hear “what do you want for lunch?” than “What does she want for lunch?” It’s also sound not to make assumptions about what someone might or might not understand just because they’re not verbal or otherwise not communicating with you.
If you keep that No. 1 rule I mentioned above in mind (always treat people with disabilities like human beings) at all times, you’ll be just fine!
I hope I’ve provided some food for thought here. If you have specific questions about interacting with people with specific disabilities, or have encountered situations you’d like some feedback on, please leave your question in the comments or email me privately so I can address specific concerns in this space.