A theory of how to talk to other people about disability

[Hoopoe]

The hardest thing in meeting new people has been revealing that I'm disabled!

Typically, when meeting a new person and having a conversation, the other person soon wants to know more about me and asks questions about work and education. And then it becomes apparent way that something isn't right. The wrong approach is to give the person "all the information". That might make sense for someone who is autistic, because it's honest and a precise and detailed communication of the information, but it doesn't work well when interacting with normal people.

The reality of disability is a very scary thing for a healthy person. The information that I'm disabled is painful for them and if they feel that I'm not respecting their boundaries and leaving them an option to avoid that topic, they will attack (either me as person, or the reality/severity of the illness).

Currently the best approach I've found is to let them know something isn't allright, and intentionally letting the situation be mysterious. That way they can approach the topic with curiosity and when they're ready for it. They can avoid it as well.

 

[Ash]

I think that’s the plan.

When I meet new people, I feel comfortable if they tell me something about themselves early on. This puts me at ease. But when people tell me a lot, I feel uncomfortable. I think this is common.

Generally friendships build up layer by layer, not necessarily slowly but in stages. You also can go all in immediately and form an intense romantic or platonic friendship with others and have it be a really rewarding relationship. But it’s more likely that you’ll find people who you feel happy and comfortable with, respect and like, by spending a bit more time seeing what you have in common, especially values and ethics wise.

People are afraid of sickness. Of grief and trauma. Many or most also like to pretend disabled people don’t exist. So that makes it all more difficult.

I hope you’ve met some nice people recently and you’re enjoying the experience even whilst ME is a curse and Autism is misunderstood.

 

[shak8]

@Hoopoe, you've just given another example of what a kind and thoughtful person you are.

 

[Sean]

Forty years into this nightmare, and I still have not figured this one out.

 

[Hutan]

I'm not sure that your disability needs to be mysterious, your initial explanation just needs to be short. Something like 'I have a post-viral illness, the flu that caused it has gone, but I'm limited in how much energy I have, how much I can do in a day'.

I actually think that a lot of people are better than being scared or afraid of disability. So many people are disabled in one way or another; a lot more people have a sibling or a parent or a cousin who is disabled in some way. There's a local tv show on at the moment about the reality of disability, showing people with disabilities doing things, and being supported by all sorts of lovely people. Also, if you are just matter of fact about it, then that signals to the listener that it's not shameful or scary. It just is. Pretty much everyone has some sort of challenge.

@Hoopoe, I've been meaning to say, I'm really impressed with the efforts you have been making to get out into the world and meet new people. (Details removed, as I couldn't remember if the news was in a public thread or Members Only. But, your ideas have been very good and I've enjoyed seeing the photos.)

 

[Hoopoe]

I actually think that a lot of people are better than being scared or afraid of disability.

Yes, but it's easier to have negative experiences than good ones. The bad experiences count more on a emotional level than the good or neutral ones.

The point of leaving things a bit mysterious is to make the details something that they want to discover.

It was explained to me that animals will become afraid if they have no escape option, and will attack if they feel threatened and with no escape. I realized this is exactly what plays out in conversations about disability. The threat is in the form of too much painful information at once. The lack of escape is caused by social norms and the person with disability not being respectful enough of boundaries.

If I say that I'm not working for health reasons this says enough about the situation for them to understand that it's a painful topic. The other person can then leave it be or ask me about the details if they want to discover more.

 

[Hoopoe]

Or I could be even more vague and say that my work and education history is unusual in a tone that reveals it's not unusual in a pleasant way.

Then if questions about it continue, I can add more details and end every response with a bit of information that naturally leads to another question. and can we can go as deep into this topic as we're both comfortable with.

 

[Haveyoutriedyoga]

On a similar note I’ve been learning not to explain myself when I can’t do something, e.g instead of “sorry I can’t do a face to face appointment/ meeting because this and that and this happens”, I say something like “I can do a telephone appointment / teams meeting after 10am” or “I can speak for up to 30 minutes” . Sounds simple but for me it wasn’t, and it feels much much better.

obviously around family and friends IF you have trusting relationships you might choose to give more details, but with strangers, medical organisers* and colleagues just stating the boundary seems to do.

*it’s another kettle of fish when you’re requesting something tricky, then the justification is often needed

 

[Haveyoutriedyoga]

Or I could be even more vague and say that my work and education history is unusual in a tone that reveals it's not unusual in a pleasant way.

Then if questions about it continue, I can add more details and end every response with a bit of information that naturally leads to another question. and can we can go as deep into this topic as we're both comfortable with.

The approach in your first few comments sounds strongest to me (saying “unusual” can come across as if you’re really hoping they ask more, but like you said earlier, you don’t want them to feel cornered)

 

[Hoopoe]

The approach in your first few comments sounds strongest to me (saying “unusual” can come across as if you’re really hoping they ask more, but like you said earlier, you don’t want them to feel cornered)

How would you do it?

Suppose you're sitting at a table at some informal event and are having a conversation. You're asked about what you currently do for work. You're disabled while looking normal enough and so nobody is expecting that just underneath this appearance of normality is a painful story.

You haven't worked in decades. After the household and self-care basics, you have just enough energy to do some "fun" activities several times a week, which healthy people do for relaxation after work, but which for you carry the risk of symptom aggravation if not done carefully.

 

[Haveyoutriedyoga]

How would you do it?

Suppose you're sitting at a table in some informal event and are having a conversation. You're asked about what you currently do for work, but you're disabled while looking normal enough and so nobody is expecting that just underneath this appearance of normality is paiful story. You haven't worked in decades and after the household, can barely find enough energy to do some "fun" activities which healthy people do for relaxation after work, but which for you carry the risk of symptom aggravation.

Casually…

Currently, I don’t! What do you do?

If asked why…

Ill health. (then ask them another question)

if asked what ill health…

I have a number of long term conditions that require a lot of management and pacing to keep myself well enough to avoid long term worstening

if asked about hobbies

I like to read (insert other popular sedentary hobbies that you could answer one or two polite questions about if asked”

My main struggle with this dance is that I don’t feel truly honest, but I have decided to come to terms with the fact that sometimes this is best, less painful overall, and protects me and my energy more.

It also comes from the place of ‘adult’ if you buy into transactional analysis parent/adult/child - and if they start probing in a judging way as opposed to a genuinely curious way, it becomes obvious that they are being inappropriate, but if you start the whole thing by preemptively explaining and justifying yourself it becomes a lot easier for them to judge and probe inappropriately.

 

[Sasha]

The phrasing I use, if conversation with someone who doesn't know my situation heads into an area that is going to get weird without some sort of explanation, is 'My health's a bit rubbish, so I can't really do X.' I keep the tone light and make a joke if I can, and they'll maybe look slightly baffled because there I am, standing there looking normal. But at least it's out there, and if more explanation is necessary as we continue, I drip it in ('low energy, get very tired very quickly') but avoid telling anyone it's ME unless as a last resort, for reasons that we all know here.

If there's someone I then get to know better, and it's getting weird that they don't know what's wrong with me, and I feel I can trust them, I tell them I have ME, with a brief 'my battery is rubbish' explanation of what stops me doing things

 

[Hoopoe]

My main struggle with this dance is that I don’t feel truly honest, but I have decided to come to terms with the fact that sometimes this is best, less painful overall, and protects me and my energy more.

I don't want to hide the disability either. I want positive relationships where I can be myself. Hiding disability out of fear of of negative reactions is not positive.

 

[Haveyoutriedyoga]

I don't want to hide the disability either. I want positive relationships where I can be myself. Hiding disability out of fear of of negative reactions is not positive.

I think with the above approach it leaves space for that to come out over time

 

[wingate]

Yes, it can be a tricky situation, can’t it? And how you explain or don’t explain yourself can depend on a lot of factors like who the person is, how well you’ve known them, and what type of social situation you are in.

It reminds me of a friendship of mine that started when I was already ill, but less severe than I am now and was out in the world more. She invited me to go hiking with her. Not wanting to explain, I claimed I was busy. Then, when more hiking invites followed, I had to come up with a better answer. After fretting about whether to reveal my diagnosis, I decided to go with something like “I have health issues that prevent me from being physically active,” but explained that I’d still like to spend time together doing something less energetic. She said ok and that was that.

It took me over a year to build up the courage to tell her more details, but by that point our friendship had grown to the point that I suspected she would respond well (and she did!). Two positive things happened as a result: a weight lifted from not having to keep the secret anymore, and now that she had more information, she could express her care towards me in ways that she couldn’t have before.

So, I guess my conclusion from that is that direct and brief explanations, and revealing things slowly as you develop trust and familiarity are potentially good tactics.

 

[Hoopoe]

What great advice I gave myself here! But almost a year later, I'm still making the same mistakes and am not good at talking about my disability. A bit less bad, at least.

It's certainly one of the most difficult topics to discuss with anyone. Now I'm inclined to think that I'm oversharing because of insecurity and a desire to find understanding, but most people can't give me that. It's just a fact of life.

I also think that a good approach is:
Talk about it without trying to please others.
Avoid the temptation of turning it into an inspiring, almost heroic story.
Disability is a fact of life and it can be treated as such.
Share the essential information, not more, unless asked.
Mention that it's ok to ask questions.
Try to be respectful.
Do not hide vulnerability, but do present it well. It's okay to say things like living with the illness is challenging, but generally not okay to say that it was horrific.

Not every conversation turns bad because of our own incompetence. It's not all our own fault. Other people can have their own flaws and negative attitudes towards disability irrespective of us.

A lot of this is about feeling accepted despite having a disability. If we don't present an authentic version of ourselves, we won't ever feel accepted.

 

[Kitty]

Share the essential information, not more, unless asked.

I think that's the most important one, but also remember you don't have to share. Privacy is important to dignity and self regard.

I rarely mention disability, and never go into detail it with people I meet socially. There are more interesting things to talk about, specially for them!

Sometimes I need to say I can't do something or attend something, of course, but I rarely explain why. Everyone has things they can't do—it could be due to disability, work, care commitments, lack of money, phobias, anything. They all have equality and none of them really need explaining.

 

[Hoopoe]

I think that's the most important one, but also remember you don't have to share.

The problem arises because the usual questions asked during the process of getting to know a person cannot be answered truthfully without also revealing indirectly that I'm disabled.

I suffered unnecessarily because my issues were misunderstood, so I'm concerned about people misinterpreting the situation. It's very unlikely that they will guess correctly. Maybe I'm too concerned.

 

[Kitty]

The problem arises because the usual questions asked during the process of getting to know a person cannot be answered truthfully without also revealing indirectly that I'm disabled.

Yes, sometimes people ask direct questions like "What do you do?". Since I've had to leave work, I've been saying I had to take early retirement. It seems to be enough to deal that one.

Maybe I'm so concerned about equality in relationships because I had a long career with a disability, and I wanted to be seen and valued for what I could do, not what I couldn't. You have to that bit tougher about respect and professional distance.

Obviously people share deeply with intimate partners, but most relationships just aren't like that. I don't like being made to feel that because of my disability I have to reveal more personal information, if that makes sense? Most people aren't being intrusive, they're just using normal conversational devices, but a few ask questions they'd never ask of a non-disabled person.

I see that sense of entitlement to know, to expect me to explain myself, as a form of discrimination. If they seem like someone I'd like to get to know, I'll gently challenge them on it and often they hadn't even realised what they were doing. (I can't be bothered educating asshats.)

I sound like a bit of a harridan!—but I'm mostly really easygoing. There are lines I won't cross, but I've learned that as long as I hold back from sharing unnecessary information from the outset, most people never go anywhere near them. Over time they will get to know a lot more about me, but I open up at the same rate that they do.

 

[Mij]

Yes, sometimes people ask direct questions like "What do you do?". Since I've had to leave work, I've been saying I had to take early retirement. It seems to be enough to deal that one.

It's certainly easier to say this because of my age, but when I was in my 30s and 40s I found it a bit awkward and only shared with people I got to know a bit longer. I never said I was disabled though, instead I told them I have a medical condition and left it at that. I found most people were respectful of that. Later on I would share more of myself, but only with a few people I felt were worthy of my energy.

Socially I became experienced at turning the conversation away from myself and back on to them.