Hi everyone. I hope you enjoyed Christmas and are relaxing during this holiday season.
If you have a moment I have some questions for you. I faced a situation last night that never occurred to me before. It flummoxed me and I'm still confused.
I attended a holiday dinner with friends, all of whom are nice people and all of whom are intimately aware of my health struggles. I see these same friends every Christmas. We ate a lovely meal. Afterward instead of chatting someone suggested we play a game. We'd never done that before. Of the 15 people present about 10 expressed eagerness to try a game. I was among them.
We moved to the living room and sat on couches eight feet apart. The game's suggester described how the game works. Every player gets a little plastic card (about 1 inch tall) on which they write a word. Players then show their cards to other players and talk about the words. One rotating player doesn't get to look at the cards and tries to guess what others wrote. The details of aren't important.
I tried to play the game but it became immediately obvious I couldn't due to my visual impairment. My eyesight isn't good enough to read small words displayed eight feet away. After five minutes of frustration I gave up, withdrew from the game and sunk back into the couch. I listened to everyone else talk excitedly, laugh and continue play without me.
I didn't sulk because that's not my nature but I did feel sour. I felt like my friends abandoned me.
I'm sure nobody wanted to exclude me but the requirements of the game had that effect. When I stopped playing I explained the reason for withdrawing (inadequate vision) but nobody paid attention; they were too excited to continue their fun.
Afterward I felt trapped: I couldn't find any way to discuss my exclusion without making the situation worse. No matter how I might try to explain things I feared people would get defensive and think I was criticizing them for playing without me. I know nobody was trying to hurt my feelings so I didn't want to give that impression. And I didn't want to ruin everyone else's fun.
Some questions for you. First, if you invite someone into your home, to what extent do you accommodate their physical limitations? Second, in the future is there any way I can avoid this situation repeating? Everyone at the party knew about my limited eyesight so mentioning that won't change anything. Finally, is this just something I need to suck up as another sad consequence of losing eyesight? Am I tilting at a windmill here?
Thanks.
I think it's a very difficult situation, especially if the group in question was both aware and again made aware of your limitations. It's definitely unfair that a group that large excluded you, but I also think people who aren't facing limitations just don't realize the extent of how those things affect you.
ReplyDeleteThe last couple of years have shown me just how isolating medical dietary limitations can make living, so I can only guess at how challenging a visual limitation can be.
In my case? I'd feel like if a friend was coming, I'd want to talk about ways to help them feel included by asking what their ability and limits let them enjoy. Obviously a game relying a lot on a sight would be out, just like I'd never serve a roast chicken to my vegetarian friend (I make a delicious stuff shell dish) because I know that friend does enjoy cheese/dairy, but I know that because I asked.
Similar vein, I met up with a blogger friend in a wheelchair in a place she knew was accessible to her, but I didn't include my at-the-time home because I knew the stairs in and out of the home would pose a problem. Instead we had a great day checking out a flea market, but that also took consideration and discussion.
It took work on my part as the friend too, to understand that my friends had those limitations and that I had to consider how that played into our fun.
However, I also think if I saw a friend drawing back, I'd probably sit myself out and talk with them instead. Some of that may come down to social awareness and maybe the group you were in was lacking it, unfortunately.
If you do feel assertive about it, maybe think on some group games that would work to your strengths or at least work with what you can manage. A game like Scattergories for example might work in a similar vein but wouldn't involve needing a small cue card, just voices, and someone to play score keeper. Or a game like Wavelength (a hot and cold game, use chili peppers as a scale to mix it up instead of green-yellow-red).
It can feel like people don't care or aren't sensitive to new changes in our abilities, but I think that leads to them not understanding how to change the conditions in which they interact with us. Giving examples of what you can do instead of what you can't may help.
Still I'm sorry you went through that isolating evening.
Thank you, Megan. Your analysis and suggestions are spot-on.
DeleteThe people I was with fail to be aware of my condition because (1) even though they "know" about it, they don't truly understand the difficulties it creates, and (2) accepting some responsibility for that myself, I present as if I'm completely normal. I don't look different and have learned to move through space well enough to mimic full sightedness. While I see only tiny glimpses of my environment they're enough to enable me to assume the presence/absence of objects as I travel. Yes, of course, I frequently bump into, trip over or collide with objects -- but I accept those injuries over moving more tentatively, both to avoid social stigma and maintain my personal morale.
If the roles were switched, I would be more attentive to the needs of a disabled friend exactly along the lines you suggest but I fear that attitude is rare. Most people don't empathize to that degree. Most people I'm meeting now, even friends, don't show signs of it. So we with the disabilities are kinda left to fend for ourselves. When I struggle in public (like trying to find my way out of a public bathroom, which is a scenario that occurs too frequently), 98% of people walk away without offering assistance. The very few who show support usually have explained "my son is blind, too" or make remarks like that.
Thank you, Megan. I'm trying to make sense of LIVING with my condition, socially, publicly, and your astute observations are very helpful. Hugs!
I'm sorry to hear you found it such a struggle and had to step back, SB. FWIW, I think that shows both a kindness (to your friends) and bravery in admitting things to yourself.
ReplyDeleteMy partner has long term health issues and she's found that often people will forget about those who have accessibility issues. To that end, agreed often had to summon her Big Girl Pants and say something. It's not something she finds easy, but sometimes I guess you need to say "I'm sorry and can we stop for a mo to make some changes? This isn't working for me."
Thanks for sharing, Lynn. Yes, I'm learning people often lack empathy, even when they have awareness, so reminding them to be accommodating is necessary. Unfortunately for me that's not my nature. My first instinct is to suffer, not disturb others. Reflecting upon what several friends have told me, I'll adjust that reluctance in the future when appropriate. Reminding others not to be inconsiderate is an okay thing to do, especially when a disabled person is being shut out.
DeleteI'm sorry to hear that your friends weren't more empathetic towards your physical challenges. I think it's important to point out that you hide your disability very well. So well that people forget the extent of your disability or that you even have one. When you and I visited everything seemed totally normal. The only time I noticed you even had a disability was when you went to leave the restaurant and had to be guided out by Robin. That said, once you indicated you weren't able to play the game due to your eye impairment people should have been willing to change to another game where you were able to participate. You may need to remind them that you want to be part of the fun and don't like being shut out. Feeling left out isn't a good feeling, especially amongst friends.
ReplyDeleteSuzanne
Thank you, pal. You make a valid point. I now realize that by hiding my visual impairment I lead people to forget I have one and thus enable this kind of situation. I'd thought that was the right thing to do to avoid making others uncomfortable but it has this negative effect. I need to refine my approach to socializing.
DeleteA while back I tried to explain my plight by telling readers of this blog that I see so little -- SO little -- that if they had my vision they'd instantly burst into tears and not stop crying. And I relate here that I frequently bump into objects, walls and doors. But, of course, few read my blog so that doesn't help the average person in my orbit who's unaware of the extent of my vision loss.
Oh, Ally, I am so sad you felt like this and the situation made you feel like this. That's really horrid.
ReplyDeleteI'd like to hope that if you/one/I knew that you had a friend (one who loves games, particularly), that you would think of games that wouldn't rely on good eye-sight and if that wasn't working for a friend, would try to play something else or at least, after that game finished, think of one that WOULD include that friend, especially if that friend had said they couldn't see, would be sensitive to play one they could play (for instance, we went to a friend's house on Friday who is colourblind and I tried to think of and play games that don't rely on colours so Qwirkle was out for me sadly...my new favourite! I've already had the idea of MAKING him a version of Qwirkle out of cardboard where I actually write the names of the colours on the tiles so he can try this enjoyable game with his wife Lara, who I know would LOVE this game- we have similar tastes and we can all try it when we get together as I know CBC likes this game too and I want us all to be able to play it). Perhaps the others, as suggested above, are right in that people are underestimating the extent of your disability and perhaps you need to say something more explicit except at the same time, I feel kind of sad that you would have to and they didn't already consider that and ask you to tell them what will and won't work for you without you having to make a point of it?
Perhaps you could say to your friends, that in future, that because you love games (I would do this as I can't bear not taking part in games when others do! I am the ultimate Christmas "I want to play a game!" person!), please could they play some games that would work for you! Could you brainstorm some games or a way of adapting them for you?
Anyway, I hope that you are able to negociate this type of social situation with a bit more inclusion on all fronts!
Much love.xx
Thanks, pal. Yes the situation can be easily addressed and resolved if other people care to fix it. That isn't the problem. The problem is getting them to "see" my vision-loss. Simply telling them it exists didn't work. I'm naturally reluctant to make a fuss or call undue attention to something I wish wasn't there; that's just not my style. But... I don't want to suffer either. I'm working on solutions and suggestions like yours help me figure this out. Thank you for them and for being you. :)
DeleteWhat a tricky situation! I think this is something where you'd have to find a way to demonstrate how your disability limits impact you (kind of the way the Spoon Theory was created), and explain it one on one. And of course, the burden to create empathy falls on the person with the disability, because our society is so poor at looking at life from someone else's point of view.
ReplyDeleteI'm sorry this soured your evening, Ally. <3
Thank you, Sheila.
DeleteSeparate from me personally, I'm disappointed that society (i.e., other people) fails to function in a compassionate way. Putting "the burden" on the disabled seems cruel. They're the least able to shoulder it.
I think if it was a one time thing, maybe I wouldn't discuss right away, or I'd discuss it at some other time. I can see how you didn't want to ruin their fun, but I also think it wasn't fair to you. Maybe they just didn't think much of it, maybe assuming that you're not that into the game or something. So, maybe now the evening if over, you could talk with them about it. I would not hold it against them, but it's not much to ask from them to make some accommodations, is it? In the heat of the moment, they might have not realized it because they were involved in the game, or it hasn't dawn on them what it means, and so on. However, if it happens again that you are excluded, you should definitely bring it up immediately. You have the right to expect them to do something about it. If someone invites you to their home to enjoy your company, you have the right to expect them to include you in social activities such as games. If they don't, what's the point of inviting you then? Sometimes people just need some gentle coaching. Some things just don't occur to some people. It's not always a definite lack of empathy, sometimes it's more unawareness.
ReplyDeleteYou're right about everything you say. I'm trying the "gentle coaching" approach with focus on future parties, to avoid defensiveness over the past one. Thanks for the sage advice, pal. :)
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