How can I comfortably discuss my disabled sister?
November 21, 2011 10:48 AM   Subscribe

How can I tactfully tell a large group of people about my disabled sister?

I am meeting my boyfriend's extended family for the first time on Thanksgiving and I want to get to know them and have them get to know me. I know they will ask about school, family, etc. and I have never really handled this question well.

The line of questioning generally goes: "Do you have any siblings?" (Yes, one sister. She's 27.) --> "Oh, where does she live?" (In my home state.) --> What does she do? (Well, actually, she's severely mentally disabled so she goes to an adult day program and lives in very small, private group home.") As you might imagine, the conversation gets very awkward, very quickly. (N.B., the response I hate most is "Oh, I'm so sorry to hear that." She's 27, we got over pitying ourselves long ago. If you could suggest something that would prevent eliciting this response, I'd be eternally grateful.)

About me: I have been dating my boyfriend for about 7 months, we are fairly serious, and I've met his immediate family (and they know about my sister.) I don't really want either my boyfriend or his immediate family to "warn" or alert the other family members because I think that would just make it even MORE awkward (and would be really unnecessary.) Also, obviously, I want his family to like me. I want to be polite and succinct as possible.

Also also, I love my sister. I am not ashamed/embarrassed of her, but I have never been able to comfortably discuss her/our situation.
posted by Flamingo to Human Relations (36 answers total) 7 users marked this as a favorite
 
I think saying it exactly the way you've written it here would be just fine.

"She's disabled, we don't pity her, and I love her to death. Tell me about your family. Any siblings?"
posted by xingcat at 10:51 AM on November 21, 2011 [3 favorites]


In describing her home or day program, you could throw in something like "The program is a really good match for her and she and my family have been really happy with that." Or "She's been working on ...and we are really proud." or something like that to give them a better idea of what her life is like and that there is no need for sadness.
posted by goggie at 10:56 AM on November 21, 2011 [12 favorites]


If you can jump right into the positive stuff, that seems like it would head off any uncomfortableness. "Where does she live?" "She lives in a group home back in [state]. I [get to visit her all the time/don't get to visit her as often as I'd like], but she really seems to like it there. They have [lots of fun activities/a garden/whatever is good about it], which she just loves." And then be ready to ask them more questions about themselves, their hobbies, where they live, etc.
posted by vytae at 10:56 AM on November 21, 2011 [4 favorites]


I get that you are trying to give the bare- bones facts with your description of your sister's situation (in order to move the conversation along) but if you want a neutral reaction I think you will need to give a more positive description.

For example, "My sister Alice has a mental disability and although she cannot live on her own, she is learning some great skills at her group home in Chicago and really thriving there. We're close and I love her a lot. Have you been to Chicago?"
posted by cranberrymonger at 10:59 AM on November 21, 2011 [27 favorites]


"Despite having a disability, she does X and Y and lives in a group home, I'm very proud of her", said with a big smile.
posted by clearlydemon at 10:59 AM on November 21, 2011 [2 favorites]


I'm in the same situation. When people ask about my brother, I usually say, he's still back in . He's intellectually disabled but has a part time job doing . has a lot of great group programs for people in the area like basketball and drama so he's keeping busy. You'd just love him. He's a really great guy.
posted by mewohu at 11:01 AM on November 21, 2011 [6 favorites]


I've met his immediate family (and they know about my sister.) I don't really want either my boyfriend or his immediate family to "warn" or alert the other family members because I think that would just make it even MORE awkward

I'm guessing that if you're going home to a big family thing for the first time, the family grapevine has already spread the facts you're concerned about. If not, I would just go with "What does she do?" "She goes to an adult day program for people with severe mental disabilities."

I think based on my own limited experience that how uncomfortable other people are with your answers is often due to how comfortable you are delivering them. My answer to "and what does your father do?" is "Oh! He mostly drinks!" delivered with a smile and some nodding of my head, and the conversation tends to actually not epically collapse at that point. Frankness is... disarming? Or something. YMM radically V.
posted by DarlingBri at 11:11 AM on November 21, 2011 [6 favorites]


Yes, frame it more positively like suggested by cranberrymonger and clearlydemon above.

The way you word it would elicit the response you don't want from me. However, I would intend that reaction as compassion and empathy, and I would be mortified to find out that you would infer condescension or pity.

However, if you frame it positively and focus on what your sister is able to do rather than what she isn't able to do or the program that she is in, I would respond positively as well. "Wow, that sounds like a really cool program!" and then I might ask you for more details, because I am interested.
posted by aabbbiee at 11:12 AM on November 21, 2011 [3 favorites]


It could be something in your delivery that makes them feel like they've overstepped a sensitive boundary. It sounds from the way you present the usual exchange as though you'd rather not talk about her at all. If you respond to "Do you have any siblings?"with something along the lines of "Yes, my sister Sue is 27 & lives in a group home in my hometown, we're really proud of her"or "Just one sister, she doesn't live independently but I can't wait until Christmas when I get to see her again, I miss her" etc. then you'll probably get less awkwardness & pity.
posted by headnsouth at 11:14 AM on November 21, 2011 [3 favorites]


Also in a similar situation. I may be wordier than you'd like, but after many years I've found that this answers frequent questions from the outset, gives a bit of context, and frees the conversation up to either move on or discuss things people may be most interested in: "One brother, he's older than me but has an intellectual disability, so it's a bit like having a younger brother. He lives in a group home near my family, [engages in a variety of activities], and is one of my very favorite people." Big smile.

One thing: be aware that I've encountered boyfriends' families "delicately" trying to find out if my brother's situation is due to a hereditary condition. This shocked me the first time it came up (were they already planning my suitability as a host-womb for potential grandchildren?) so I mention it in case it's helpful to anticipate that the question may be asked.
posted by pammeke at 11:23 AM on November 21, 2011 [4 favorites]


Succinctness may not be the best tactic here. When you don't volunteer this information and it comes out as a result of questioning, the asker can feel like they've accidentally stumbled into a topic that you're sensitive about and then they're not sure how to get out of the perceived corner they've backed into. They were in charge of the conversation, it ended suddenly in potentially weird territory, and now they don't know what to do. Hence the clunky "Oh. I'm so sorry to hear that" response you tend to get.

From my own experiences, the best response is to take charge of the conversation. Everyone above have given you great prompts to do that. That doesn't mean you have to suddenly become the disability spokesman who answers any and all questions about the subject, because that can sometimes be worse than the awkwardness you encounter now. But, generally, the best way to shut down a line of questioning tactfully is not through complete obstruction (like your current tactic), but though redirection. Give them a small bit of info to sate their immediate curiosity and then immediately pivot to a related-but-different line of questioning like cranberrymonger demonstrates.

If you're not trying to shut down the line of inquiry and are open to more in-depth discussion about your sister, you still want to offer that bit of information at the beginning. It will help show that you're open to talking about it. I'm thinking something along the lines of, "Do you have any siblings?" "Yes, my sister lives back home in state where we grew up at an adult group home. I visit her as much as I can, and we're hoping to get out there over Christmas/New Year's/birthday to visit."
posted by lilac girl at 11:24 AM on November 21, 2011 [4 favorites]


I want to be polite and succinct as possible.

Yes, I think this may be a large part of what's causing the awkward environment when you talk about your sister. Think about all the things you're normally "polite and succinct" about. For me, those are the topics I find awkward and don't want to talk about and/or think it's rude for people to ask me about, yet I am obligated to make some kind of reply. I think people might be inferring that that's how you feel about the topic of your sister; if you're reacting the same way you'd react if someone asked you your salary or your weight. I think from your own reaction, people may believe they've offended you or brought up a sore subject.

Do you believe you have to be succinct because idea of mentally disabled people will disturb/upset everyone so you have to get off the topic ASAP? Are you worried that bringing up the topic of mental disability is kind of gauche so you have to be really polite about it? If so, I think you are most likely very mistaken on both those counts. You don't have to be succinct about your sister. You don't have to be any more "polite" when telling people about what she does than you are when telling people about what any of your other family members do.

In your shoes, I'd probably say something like this:

"Do you have any siblings?"

"Yes, one sister. She's mentally disabled, but she's achieved a lot over the years and we've been very proud of her. We're very close."

Then when they ask you more follow-up questions like her age etc., I think the tone will be very different and it won't be awkward/pitying at all. You have to take the lead on the tone. Open, warm, happy.
posted by cairdeas at 11:36 AM on November 21, 2011 [3 favorites]


If someone does say, 'I'm sorry". Say, "don't be, she has a more active social life than I do. Every time we talk, she's going on a field trip or doing arts and crafts. She has a good life." Then change the subject to the weather where she is versus where you're visiting and move the conversation along.
posted by shoesietart at 11:38 AM on November 21, 2011 [1 favorite]


You're describing a challenging situation that most people feel thankful not to have dealt with directly: a close family member with a mental disability that seriously limits her options in life. If you just said, "My sister is severely mentally disabled and lives in a group home," I'd feel sympathy--not pity--because all that that description gives me is a picture of her limitations. I'd think of the hopes I would have for a sister or daughter of my own that your sister can't attain. That's not a criticism of you, just an observation: if all you describe is her disability and living arrangements, people are going to react to the limitations and challenges those things imply.

The way you're currently handling these conversations, it sounds like you kind of let people drag it out of you. That makes it seem like a big bad thing. Be proactive and give people a full picture of your sister--not just her disability and living arrangements, but also how she fits into your life and why you love her:

Person: Do you have any siblings?
You: Yes, I have one sister. Her situation is pretty unique because she's mentally disabled, so she lives in a group home near where we grew up. She's 27 now and is doing well in her adult daycare. She loves it because they let her do [something she likes] and they have great people on staff. My parents have made great choices in managing her care, and I love visiting her and spending time [doing something you do together].

And if they still respond with pity--
Person: Oh, I'm so sorry.
You: Don't be! Like I said, she's happy and so am I. I know it's hard to imagine facing that kind of challenge as a family, but when it's your own family, it's just normal.
posted by Meg_Murry at 11:41 AM on November 21, 2011 [8 favorites]


You definitely need to frame the situation from one of empowerment.

I would also be someone who would respond "I'm so sorry!". Not because I think you deserve a pity party. But I would misattribute your uncomfortableness to bringing up a sore or painful discussion for you. If you love her, talking about your sister should be something of a joy. A story is a way to carry people around with you. When you talk about her, not only do you get to relive some great memory you have of her, you also give people the opportunity to know about this wonderful person.

We ask about family and jobs and hobbies because it's a lazy way to get to know someone. Try to remember this so that you don't feel like you're letting down the listener by not giving an answer akin to "Suzy just made sales manager at X Corp". That answer doesn't really convey any information either. The interesting part is if she's excited about her job, or doesn't care that she's been passed over for eight promotions because she has gorgeous kids at home, or is secretly working on her screenplay that will make her the next Diablo Cody.

Let them know what you love about her. Not what makes her life difficult. They'll respond to the story you give them.
posted by politikitty at 11:48 AM on November 21, 2011 [1 favorite]


I don't have any experience with this situation. but to me the "We're really proud of her/she's doing great!" answers sound kind of awkward too, like you're overcompensating. I mean, unless I hear from you to the contrary, I assume that you love your sister. As a casual listener, I would feel most comfortable (and would respond accordingly) with an answer like, "She lives in a group home for disabled adults. She's really close to my parents' house so I get to see her a lot," or "She lives in a group home for disabled adults. She spends a lot of time painting," or something more factual and less defensive-sounding.
posted by chickenmagazine at 12:00 PM on November 21, 2011 [8 favorites]


We're a pretty small clan and I don't have anyone in my family with any developmental disabilities. So I can only imagine that if I was on the other side of that conversation I'd similarly find myself at a loss for where to point the conversation. As others say above, you need to provide the queues for where the conversation will go and send the message that they haven't just blundered into a minefield area of conversation.

Consider the fact that, from this side of the conversation, I don't have enough frame of reference to know what kind of questions to even ask. We ask about family member work and achievements because it's an avenue we can relate to - if we don't work our partners do, and many of the challenges are identical across careers.

Your sister's life is a mystery to us; the aspects we understand like group/assisted living are ones that we only think about as they relate to our own aging and they kinda freak us out. Having to hold our hands through understanding the good stuff is a drag for you, but we're unarmed and helpless here. As is said above, the best way you make the conversation comfortable is by being visibly comfortable talking about her.
posted by phearlez at 12:23 PM on November 21, 2011 [1 favorite]


Were it me (and by the way, I have a daughter with disabilities) I would simply say, "I have a sister named Alice who lives in a group home with other people with disabilities. I just saw her and/The last time I saw her she was telling me about..." and then tell them something brief and interesting, then just go with the conversation dynamic.

Said with a smile, you will convey the pride and love that you truly have, which any family would want you to also lavish on your boyfriend.
posted by plinth at 12:23 PM on November 21, 2011


Thanks for all the great responses. The comments about *how* to frame what I say about my sister are so spot on. And she is doing great, so that part will be easy to convey. :)
posted by Flamingo at 1:15 PM on November 21, 2011


Oh, and as for:
Do you believe you have to be succinct because idea of mentally disabled people will disturb/upset everyone so you have to get off the topic ASAP? Are you worried that bringing up the topic of mental disability is kind of gauche so you have to be really polite about it?

the answer is mostly yes, so I am glad that...
you are most likely very mistaken on both those counts.
posted by Flamingo at 1:17 PM on November 21, 2011 [1 favorite]


I think that some of the discomfort comes from the fact that it's hard for people to know how to follow up on the topic they've introduced when the only information they have is "developmental disability." There are people with such disabilities who are nonverbal and unable to interact much with others, and people who engage in a lot of activities and have jobs and hobbies and whatnot. If I don't know where your sister falls on that spectrum, I'm going to feel uncomfortable asking too many questions about what her life is like for fear of stumbling and making unwarranted assumptions about her. If, however, you can tell me something about her activities, or about how she interacts with your family, or about something going on in her life or in your family, it gives me a clue about what follow up questions will be "safe" and lead to an interesting conversation. Tell me about her job or her hobbies, or about activities and activism your parents engage in on her behalf, or about the town where she lives, or something to give me a clue about what to say next. People often say, "I'm sorry" to apologize for not knowing what to say next. If you tell them what to say next, they don't have to apologize.
posted by decathecting at 1:21 PM on November 21, 2011 [2 favorites]


You don't have to disclose it. You love her, and maybe you're close. You have an older sister named Jane, who lives in Whoville. What does she do? She attends a day program/school for people with handicaps (although that's a bit of an invasive question). The answer reveals her status in context. For your BF's family, when they ask about your family, tell them you love your sister Jane, who lives at home with Mom and Dad, in Whoville. She's in a terrific day program for people with handicaps. I have a handicapped brother, and I often don't mention the handicap, as it isn't important in general conversation.
posted by theora55 at 1:22 PM on November 21, 2011


Really just chiming in in support of the above, but my partner is in your situation, with a brother living in a group home. When he tells people about this, he usually brings the topic up himself (usually this happens naturally, when something reminds him of a story involving his brother) rather than waiting to be quizzed about family members. He'll start with something positive or a recent story about his brother, and it does seem to help people to feel less awkward than if "brother, mentally disabled, group home" is all they know about him.

On preview, I think what decathecting says about guiding people's questions is really true - describing partner's brother with "well, he watches a ton of Pixar, and he really likes the art class at the YMCA" seems to help people get an idea of what kinds of questions to ask.
posted by heyforfour at 1:43 PM on November 21, 2011


One thing: be aware that I've encountered boyfriends' families "delicately" trying to find out if my brother's situation is due to a hereditary condition. This shocked me the first time it came up (were they already planning my suitability as a host-womb for potential grandchildren?) so I mention it in case it's helpful to anticipate that the question may be asked.

Oh my god, this. I still have no idea what the graceful response to this is (I try to arrange to be the buffer that gets these questions, instead of my boyfriend), but forewarned is slightly less gobsmacked, I hope?
posted by heyforfour at 1:46 PM on November 21, 2011


Other people have framed what I'd say - so focus on being positive and showing how much you love your sis with stuff about who she is (likes Pixar, paints boats, whatever) instead of just facts.
posted by canine epigram at 1:50 PM on November 21, 2011


Butting back in to say that I've been pleasantly surprised by how warmly people outside my inner circle have responded to little vignettes I've shared about my brother - for example, I'll generally mention that one of his activities is yoga (which tends to surprise people) and that he calls his favorite pose "Saying 'hello' to the sun."

Things that delight you about your sister will likely delight others as well.
posted by pammeke at 2:06 PM on November 21, 2011 [1 favorite]


I don't think you can control how people respond -- and no matter how you frame it, someone is always going to come out with an "I'm sorry". I think it's about going about your conversation from there (using any or all of the suggestions in this thread) and letting the "I'm sorry" slide off you. I don't think the actually content of the response matters all that much when it's along those lines.

When I tell people I'm deaf, I usually get an "I'm sorry" or even a "that's okay" and both used to bother me, but I can't make people respond a certain way so I just have to live with it. It's a part of my life (as much as your sister is a part of yours) so I'm always coming up against it. (In the case of the "that's okay", though, I am sometimes very tempted to scream obscenities at them, or at least a "yeah sure that's okay for you, how do you think I feel?" But I don't.)

It's not about the content of the words but rather a response of some kind is needed so people tend to resort to platitudes.
posted by prettypretty at 3:05 PM on November 21, 2011 [1 favorite]


Similar situation here. "I'm sorry" is simply something people say in these situations because it seems inappropriate to respond "Oh that's lovely. I'll just go baste the turkey now." I wouldn't take it personally. I'll usually say something like "she's been always the happiest person I know" if the pity party gets started. I've gone further with some people and shared a little anecdote along these lines, like pammeke suggests. I've never really thought about it in those terms, but sharing something about your sister's happiness or joy is much closer to the same conversational template as "I have an older brother. He's a lawyer/banker/taxidermist/pizza guy," so it helps everyone to respond more normally and move on.
posted by zachlipton at 3:16 PM on November 21, 2011


Not to derail but Prettypretty, or OP, could you give an example of how you would like people to respond?
posted by saradarlin at 7:15 PM on November 21, 2011


I agree with others that it may be your choice in language that people are responding to. The use of the word "severely", as in "severely mentally disabled", seems to put a negative spin on things even though that's probably not what you intended. Maybe you can first give facts about her that don't mention her disability: "My sister lives in Chicago, she's 27, and since she has some mental disabilities/challenges she lives in a group home. She has a part time job doing ______". This is somewhat neutral in case you want to avoid defensive "rah-rah-ing", but also does not sound like something people need to feel sorry about.
posted by bearette at 8:03 PM on November 21, 2011


and by "defensive rah-rah-ing", I mean what some people perceive to be so. I actually think it is kind of nice to be super-positive and emphasize your sibling's good points, just not sure if that was what you wanted.
posted by bearette at 8:06 PM on November 21, 2011


Also also, I love my sister. I am not ashamed/embarrassed of her, but I have never been able to comfortably discuss her/our situation.

I think that it is actually a lot more common of a situation than we often think. Not many people might have a sibling in a group home, but most people have a family member who is "different" in a way that's hard to discuss publicly, ranging from disabilities to addictions to incarceration to who knows what. We feel alone, because no one talks about this stuff, but it's actually part of many people's lives, and learning to talk about it naturally with people makes life so much easier. There's so much shame and secrecy caught up in disabilities (as well as in the other kinds of socially difficult things that family members tend to be involved with), and it is so hard to not carry that shame into our own lives.

One thing: be aware that I've encountered boyfriends' families "delicately" trying to find out if my brother's situation is due to a hereditary condition. This shocked me the first time it came up (were they already planning my suitability as a host-womb for potential grandchildren?) so I mention it in case it's helpful to anticipate that the question may be asked.

Yeah, this happens all the time, though it's definitely shocking the first few times. I have responded a couple of different ways, depending on my reading of the situation. When I think it is someone who is well-meaning but clueless, I will explain the facts and try to educate. People genuinely tend to not know almost anything about disabilities, and it's ok to be afraid of what you know nothing about. When I think it is someone being a bigoted asshole, though, I'm very willing to be an asshole right back at them, and let those bridges get burned.

Not to derail but Prettypretty, or OP, could you give an example of how you would like people to respond?

I am not either of those people, but for me the real test is if people can respond with comfort and a lack of either pity or excessive avoidance. Not "I'm sorry" or "Hey, how about those Dodgers," but just sort of a normal reaction, like if you told me you had an uncle in Cleveland and I mentioned that I had visited there once, or that I love some band from there. And I try to make it easy for people to give that kind of response by being comfortable and positive in how I talk about it, rather than acting ashamed or secretive; people want to be helpful and they will usually follow the conversational cues you give them. If they are always responding in a bad way, it is worth looking at how you might be influencing that situation.
posted by Forktine at 8:06 PM on November 21, 2011


I am in a similar situation as the OP and I agree with the advice here, just be direct.

One thing, you said:

"and I've met his immediate family (and they know about my sister.)"

Just be aware there is a possibility (and high likelihood, depending on the family) that the extended family already knows all about your sister.
posted by seesom at 8:08 PM on November 21, 2011


saradarlin: maybe I came across more negative than I meant to: I can't get upset about people saying those things because I think that's quite a natural response on their part on hearing (ha!) that about me for the first time.

The important bit is how the conversation goes from there and that's been amply covered in this thread, so I won't say any more except to point out that "arsehole" = the guy who said "what's the point talking" and "not an arsehole" = the friend who, in a restaurant full of people, shouted "I haven't had sex in three months" seven times until I heard him.
posted by prettypretty at 9:52 PM on November 21, 2011


(and because I didn't read or even preview -- what Forktine said!)
posted by prettypretty at 10:01 PM on November 21, 2011


re: Not to derail but Prettypretty, or OP, could you give an example of how you would like people to respond?

I'd like them to not feel awkward or weird or uncomfortable. I also would love to avoid the poison womb conversation/any conversation regarding how she became disabled. (It seems a little too personal, IMO, but I understand it's natural curiosity. And if they *did* hear the story, it would be a bit much/it would veer into the "oh god, sorry we brought it up" territory.)

I want to hear, "Oh, that's great." and have the conversation move on.
posted by Flamingo at 9:36 AM on November 22, 2011


« Older Songs that keep building until they almost explode   |   Remove the shopping bag from this otherwise lovely... Newer »
This thread is closed to new comments.