This morning i went to a prayer meeting i used to regularly attend when we lived in Oakland a year ago.
This other couple arrived just behind us and so i turned around and greeted them, shook his hand and as i went to greet her i assume i must have put out my hand, and so she put out her hand and i wasn’t even properly looking and so it must have been my extremely great peripheral vision [cover your cards when you’re sitting next to me in poker] that alerted me to the fact that something was different. She only had one finger in the place where i was expecting a whole hand and so there was a last second adjustment and i think i ended up shaking her wrist, rather than her hand. Which felt a little bit weird.
What is the protocol when shaking hands with someone who has a finger where the rest of the hand should be? Is it to shake the finger? Or to go for the wrist? Urgh, wrist felt wrong and so i felt awkward and it all happened so quickly and other people arrived and so other greetings were made and then we very quickly got into the meeting and so i still don’t know the answer to that one. i also don’t know if it would have been okay/right/normal/polite for me to have asked what happened [or did something even happen or was she born like that?] or whether you just pretend everything is normal and try not to stare.
i wonder how it is i once managed to write a post titled ‘Blessed are the Retards’ without one bit of push back? Maybe it’s cos that was way back in 2010 when no-one was reading my blog… i mean clearly i get the point of what i was trying to do then, but i didn’t even disclaim or give reference to or anything… or maybe that was the point? But the question was the same, how am i supposed to be around someone who is different if i don’t know how to be around that person?
i mean i feel like a bit of a dick writing this. i don’t think i’m a complete dick. But something about this feels like it should be completely obvious and yet, it just sometimes isn’t [and sometimes it is a lot more obvious than other times]. i also hope that above picture isn’t advocating that we hold little kids in wheelchairs above our heads cos i don’t know how safe that is.
i found the series i ran on the Taboo Topics section on my blog on Living with Disabilities to be super helpful in this regard. My friend, Louise, who has Asperger’s [which i always had heard as asBergers before, so even that little bit of learning was helpful] wrote this really helpful piece, but she also took time to explain a lot more in depth and send me links to helpful articles and videos. So i feel like i am a little more equipped now to understand some of what might be helpful to her when we hang out.
i have asked a few different people to write a piece on Down’s Syndrome but so far no takers. My experience has been that people with Down Syndrome for the most part tend to come across as incredibly joyful and happy people. i would love to know more. Is that even true? And i feel like someone taking the time to share a story with me and some insight might help me to interact better next time i come face to face with someone with Down Syndrome.
i imagine there is not a one-size-fits-all to this. But also that unless i’m the biggest doucheball the world has ever seen [some would very likely attest to that!] that others might be feeling the same things or wanting to ask the same questions. And i imagine that a lot of the education comes through story-telling and so maybe i just need more people sharing more stories of different people who are living with disabilities.
i mean, this is the answer to our race issues, right? And also a big help for those who are trying to figure out being married to hear from others who have journeyed for various numbers of years at that? And again and again it has shown to be true of the so-called Taboo Topics, where stories shared on areas that have rarely been spoken about [like losing a child or being single, struggling with an eating disorder or trying to be a parent of a young child when it hasn’t been all that easy, and more] have given encouragement, strength and hope to others who find themselves in similar places.
i’m convinced that story-telling and relationship-building is one of the biggest keys to living life well in all spheres and this is just another one of those. And probably a good reminder for me to realise that as different as a different seeming person may be to me, i am the equivalent amount of different to them and so maybe my story is important as well.
What do you think about this? Is it way more simple [or perhaps completely more complicated] than i am making out?
What story would you like to hear?
[One of the most incredible responses ever, thanks to my friend Michelle Botha]
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“i’m convinced that story-telling and relationship-building is one of the biggest keys to living life well in all spheres and this is just another one of those.” Cannot agree more.
I’m not quite sure about the level of simplicity/complexity of it all but what I do know for sure is that if we’re more open-minded about many issues like disabilities etc it will definitely make for a better world.
When I look at my kids music instructors (who happen to be an NGO run by people with disabilities – Loud Ability) I am in awe because they are living proof that disabilities is not an excuse and they are educating the kids about it as well. Their mission statement states “Focus on your ability” and man do they have abilities!
Sorry I can’t enlighten you on Down Syndrome but the kids and adults with DS that I have come across are just absolutely beautiful people. They have this carefree air about them. I always seem to think that they are fortunate in the sense that they don’t experience the world and its ugliness like we do at times. I could be wrong but that’s my 2 cents on the ones I have met.
Thanks for posting this – there is a huge culture of silence around the difference of disability and encountering different bodies so thanks.
So my master’s thesis was all about difference and sameness and how people with disabilities exist in a very uncomfortable in between space.
There is so much going on in a moment like this (for both parties mind you) – embarrassment, awkwardness, guilt and all the things we think we know about difference and sameness; who is different, who is the same, what it means to be different and what it means to be the same. In short, lots of baggage!
I think this generally causes the difference to eclipse everything else. In this case missing fingers, which is different because hands are supposed to have fingers so I tend to avoid concepts like “difference is just construction” or, in my case, “blindness is alternate sight”, um, no. And then difference tends to take over the conversation and any relationship going forward. The normal questions that people ask people (‘what do you do”, “are you married” etc) get replaced with “what happened to you?”.
No, I don’t think we should disclaim difference. I think a handshake is a weird thing people do to make tactile contact with each other when we meet and that’s what you did, there just weren’t fingers involved. I work with a lot of people with various disabilities and when I meet someone new I always reach for their hand, there may be missing fingers or arthritis that prevents them from opening their fingers and of course, I’m blind so that makes finding someone’s hand an interesting exercise in itself. but however it ends up, we’ve still managed to have a “Hi, I see you (except I don’t but you know what I mean), we have connected and when I know you better (all the complex, interesting, great things that make you you) I might ask you about this moment and whether I handled it in an appropriate way”. Relationship is key I feel.
PS – I feel a bit uncomfortable about essentialising people with Downs as the eternal children/the innocent ones etc. I don’t know much but I do know (from the people and families I know) that Downs is tough and people are people who get sad and tired and angry and frustrated so yes, definitely something to talk about more.
Can I recommend the book “Staring: How We Look” by Rosmarie Garland-Thompson for some great insight into this kind of stuff.
Thank you so much Michelle, Would you be happy for me to use these thoughts in a follow-up post so more people can see them rather than just the few who make it into the comments section? Or if you’d like to write a post on this kind of thing i would gladly post that as well. Really appreciate you taking the time and i must look out for that book.
Sure, it’s a little “word-vomity” as it is. I’ll email you a slightly more comprehensive version in a day or so if that’s ok and feel free to post it if you like.
Excellent. Thank you.
[…] other day i wrote a post titled, ‘Do the Different Need a Disclaimer?’ in which i touched on how meeting someone with a disability or condition that makes them quite […]
Hey Brett! Love love love the way you open up these NECESSARY and beautiful, world-changing conversations because I think all the taboo-ness stuff brought into the light makes us more authentic and effective as Christians.
I know when people meet my visually impaired son, or interact with him, or engage him in conversation, the things I value most are when they don’t speak to him slowly and loudly, like he’s deaf or stupid; when they use his name so that he knows he’s being spoken to; and when they keep up a bit more of a running narrative than might be ‘normal’, so that he can follow what’s funny or fascinating in a room. I never introduce him as ‘This is my son Cameron who is visually impaired’, because I never want him to feel that it’s what defines him, but where and when necessary, so that he can cope, I’ll drop that ‘disclaimer’ into the conversation, so that he or the people he’s dealing with don’t get embarrassed. I guess as he grows up he will – is already – learning how to handle those disclaimers for himself.
Much love
d
Ah, thankx D. There seems to be way too much to still learn in life for this young 41 year old but glad to have such loving and gracious people around like yourself to help guide me through some of the confusing parts… love watching you raise your sons and the lessons you share with us all [and those you keep for yourselves!]
love brett fish