By Claire Hamilton Russell
The number one thing I’d suggest never to say to a disabled or chronically ill friend, relative or acquaintance is “But you’re looking so well!” or, worse yet “Everyone was saying that you’re looking so well!” “You’re looking so great!” is slightly better, but has a lot of the same issues.
I genuinely get it. When you see someone that you probably don’t see a lot of, especially when what you hear from them is a lot about illness, you want to tell them how pleased you are to see them, how glad you are that they’ve made the effort to come out to this occasion (even if it’s just for coffee), and how glad you are that they’re not a heap of tubes and limbs in the corner. You may wish to say that you can see the effort they’ve put in to dressing and presenting themselves well and how well they’ve done at that.
Just, please, if you have any alternative whatsoever, don’t use those terms. Please.
I recently attended my mother’s 60th birthday party. I live near her, but, due to a bad combination of circumstances, I had to attend a high-energy event in the midlands for two days beforehand and then take a five-hour train ride home from an unfamiliar station on the day of the party. To make matters worse, the station – Birmingham New Street – was evidently in the midst of some sort of upgrade or repairs. A wonderful friend dropped me off, but I had to walk a long way (for me) within the station with no access to seating, my crutch slipped on the flooring repeatedly, escalators and lifts were blocked off, and, the biggie, I missed my train due to all these factors and the fact that station staff seemed too busy or unwilling to help me find accessible ways to my platform in time.
I nonetheless made every effort to make sure I was in as good a state as possible to attend the party (which I had organised with my partner) because I adore my mum and wanted her to have a good special day. I had nice clothes and makeup packed in my car and changed painfully when my partner (eventually) picked me up. I arranged for him to meet me with a cup of tea so I could take the single dose of tramadol I had kept for this (did I mention that my partner is amazing?) I didn’t want to be a wreck. I took everything and made an effort to walk as “normally” as possible without leaning heavily on my crutch.
It was a really nice party, and went very well. But I heard those phrases over and over again from the relatives and family friends there, and, I admit, every one of them was a slap in the face to me. Except they’re still gnawing at me now. What those phrases tell me is “You don’t look ill. Why do you keep saying you’re ill?”
(And the person who added “Are you sure you really need your stick?” – Yes, I really do. It’s a pain in the backside, and it’s worse when I need two. There’s nowhere to store them when I sit, people “helpfully” move them, leaving me stranded, and using them exacerbates my shoulder, back and neck pain really quite badly. I wouldn’t use them if I could manage not to. But without them I’d be way more limited than I already am.)
Most of those people will never see me at my worst, or even the way I am the majority of the time – because I don’t go out when I’m like that if I can possibly avoid it. I stay home. I rest in advance (if possible). I take my strongest painkillers, and I *act* “well” like crazy. This is why I work freelance from home these days – because doing this for a few days in a row leaves me unable to leave the house for a week or more afterwards, and working from my couch means I only have to put my laptop aside when I feel dizzy, or a blinding headache hits, or my hands start shaking to the extent I can’t type.
If you want to let your friend or relative know how happy you are to see them out, or how much you appreciate the extra effort they put in – why not say that instead? Why not focus on how lovely it is to see them? If you want to compliment their appearance, why not tell them how much you like their hair or their outfit, how awesome their makeup is, how much you like their shoes, how wonderfully their sense of style or their attitude comes through? It’s a compliment that is measured, specific, and appreciates rather than judges.
If you have a disabled or chronically ill friend or relative, one of the best things you can do for them is to remember all the time that what you see of them is not their worst, or even their “normal”. It’s their high-effort “best”. Don’t judge their capacities by the times you see them – or, best of all, don’t judge them at all. They know their own capacities – so if there’s anything specific you want to know, ask them!
It’s also unlikely to be helpful to speak to them of how “they are genuine, unlike that skiver you saw in this place”, and particularly to follow up with “therefore you will obviously qualify for (insert scheme or benefit here)”. You have no idea of the circumstances of the other person you are judging vocally. You may be intending to reassure your friend or relative, but, honestly, you are almost certainly reminding them of the casual and continuous judgement and condemnation they receive on a daily basis. Not only behind their back, but, unless your friend or relative is outstandingly lucky, they will regularly be verbally abused, sworn at, spat at, perhaps even threatened or attacked, due to their visible disability or its signifiers (such as a blue badge) while venturing out in public.
It is incredibly and continuously demoralising and upsetting to be subjected to as the result of something you cannot control, and thus seeing people you care for engaging in it with respect to other people is nothing but horrible.
And, genuinely, unless you have some very specific expertise in the current benefits system, it’s probably best not to get into it. Your friend or relative almost certainly knows more about it than you do. Tabloids are in the business of selling papers, not providing accurate information about an immensely complex and difficult system. Spending a chunk of time at a social occasion having to explain to older relatives that the situation has changed from when they could claim “the dole” during their college summer holidays in the 1970s is probably not fun for anyone.
Generally, when your disabled or chronically ill friend or relative meets you, what they want from you is exactly what they wanted before they became sick or their condition worsened, or what your other friends/relatives want from you. They want to enjoy a fun activity together, possibly with some adaptations, possibly not. They want to hear about your life and how you are getting on, to talk about things that are important to them, to have a laugh with you, and to come back home feeling loved, cared for, valued and wanted by the people they care for. They will almost certainly have to face a toll from their own body and mind for what they have done, so feeling they have expended that energy and incurred that toll wisely is very necessary. If you can keep that in mind and behave accordingly when you see them, you are already making this much more likely, and this makes it much easier for them to come out and see you again.
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