• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Disability equipment delivery man is casually ableist

"Is this stuff for you?"
"Yes, it's for me."
"But there's nothing wrong with you. You look fine."
"That's why it's called invisible illness. I feel ill every day, I can't leave the house much, I'm weak, I struggle to walk..."
"You look perfect."
"Thank you, but I'm very ill."

A delivery man for a disability equipment company came round to deliver and fit a kitchen chair and a bath board. I don't feel offended, but I feel disappointed that I had to explain what invisible illness was to someone that works with disability services, and I don't think I got through.

I'm not sure if it's a real compliment to be called 'perfect' in this case because it implies that having a disability makes you inherently imperfect. So if it's invisible, it's like saying I'm inherently imperfect, but at the same time it's denying the possibility that I actually live with disability. As if I'm lying.

I don't think disabilities are 'perfect'. But I think calling someone perfect BECAUSE they don't seem to have a disability implies that anyone with a disability is imperfect, and anyone without one is perfect. To me this is kind of disability discrimination, even though I think this guy was trying to be nice.

I think he was trying to tell me I'm attractive... which is another kind of inappropriate, since I was alone in the house with a stranger, while I was in a dressing gown and pyjamas, especially since I probably fall under the 'vulnerable' bracket with my physical limitations. Simultaneously I recognise that he was trying to compliment me. Unfortunately, in his world it's a compliment to not look disabled.

I'm still working out my thoughts on this. The world is ableist. Calling someone words to do with disability is an insult - 'retard', 'crazy', 'mad', 'lame', etc. Disabled = bad in the majority of people's worlds.

It is difficult to live with disability - it makes my life worse. But it does not make ME a worse person. Those labels are applied to people, not to situations.

Every time I'm told I don't look ill or disabled, as if it's a compliment, it's affirming the idea that being disabled would make me inherently bad, and implies:
1. I can't possibly be disabled - a refusal from the compliment giver to believe how ill I am - putting me in a position where I sometimes feel I have to explain myself
2. Since I am in fact living with disability, this makes me inherently bad.

If I say 'thank you', does that imply that I agree that being disabled is inherently bad, and it's a compliment to tell me I'm hiding it well? When I said 'thank you', I was thinking of this man's positive intentions rather than his world view. But I don't want to encourage his ideas. In this case, I think the 'thank you' helped close down the conversation, which I didn't have the energy for. Next time, I don't think I will say 'thank you' unless I need to shut the conversation down.

I would appreciate any thoughts about this - I'm still sorting through the ableist ideas I've grown up with.


I think "ableist" thinking probably rules 99% of all humans. I guess it's a bias we all get used to and conditioned with. You're pretty and you can walk, talk, look nice....therefore you had to have that kind of conversation. Yes it's not easy.
People say to me "YOU look well!" I don't say anything. I have no words.....I want to be well. I wish I was. When they say that, I have inner tremor, feel sick, have a pain over my right eyebrow, hearbeat all over the place,feel generally odd.
They can't see me on the inside. I guess it's not their fault... I put lipstick on most days.....Why? I have no idea....unless I'm also buying into the "ableist" thoughtform?
I hope the bath /shower seat plus kitchen seat help you a lot @lior. They sound very good to have.
"Calling someone words to do with disability is an insult - 'retard', 'crazy', 'mad', 'lame', etc. Disabled = bad in the majority of people's worlds. "

There is two opposite ways to really insult someone with a disability, that way above, the other way to ignore their issues and imply they are lying an not disabled. This is way too common around those of us who have ME/CFS even in health fields and I deal with this by trying to educate the person as IT IS OFFENSIVE.

I have actually at that point told people that they need to educate themselves better and disabilities and try to point out to them that even those with incurable cancer may actually "look healthy or ok" still but then die within weeks. There are some great examples of this on youtube
Emily hayward, PeeWeeToms (Dan) and others. Even those cancer patients had people at times not believing they were actually sick cause "you look too healthy" or "you cant be that sick, you look good". Dan ended up having to try to defend himself from ones who were calling him a lier. (that just makes me want to scream).

is it our faults for making ourselves look better? someone may of put lipstick on or we've actually just managed to do our hair that day or managed to get out of our pjs? Nope of cause not, we should still have the "right to look good" without judgement.

Ive been judged too much negatively in this manner to the point I now longer care if I look good or not. I equate looking good now with more often being negatively judged and treated like a lier. It's a strange world we live in when we start to fear of "looking too good"
this black & white categorizing (sick or well, attractive or ugly, success or failure) is endemic to contemporary thought. there's much harm in it for people even deemed in the desirable categorizations across the board...no doubt many of us here have found it challenging to expose our vulnerabilities to outer tier friends + acquaintances-- the 'coming out' conversation when you change your designation from able to disabled is daunting because so many people shift all the categories (often shifting you out of their world entirely...and no matter that you say they must not be a person with values you admire so it's no loss, it's still insulting, you can't dehumanize insensitive folks if dehumanizing isn't in your nature).

in terms of wearing lipstick, I feel this is the same as where it pertains to feminism-- all choices must be acceptable. if you brighten your face for your own positive self-image, great. if you blend your eyeshadow in the morning so as to blend in and not wear your disability on your sleeve, great. if you grow your eyebrows together frida kahlo-style because plucking would take time from meditating or emailing your cousin in your only spry minutes, great. we need to be kind and honest to ourselves and with each other while recognizing that the world wants us to be b+w while this is unnatural so just be clear that whether you want to call out the discrepancies or fly under the radar, it's okay so long as it's what's best for your healing process.

these are important questions- glad you're asking them. on a side-note, like @wolfcub, I wish you well with your new gear around the house~*~* is the kitchen chair like a tall stool to sit comfortably at the counter?
Thanks for all your responses. I'm glad what I said resonates with others. @ravenmom what you say about all choices being acceptable really speaks to me.

The kitchen chair is indeed a tall stool. It's a bit tricky because there is nowhere for my knees to go when I sit at the counter - it's not like sitting at a desk. So mainly I use it to rest while waiting for things to cook - if I can sit for longer than 5 seconds, I'll do it. My able bodied housemates have been using it too, so I don't feel bad about it taking up space, as I thought I might.

The bath board - game changer. I don't have to rest as long after a shower, and I don't feel like crying as often out of fatigue while showering.
I look at it as residue from the National Institutes of Health propaganda campaign to label SEIDS a mental illness so the insurance companies could write off claims as mental after two years. See the book Osler's Web. About half of MDs were convinced that SEIDS was "Yuppie Flu" and many more less intelligent nurses.

Blog entry information

Read time
2 min read
Last update

More entries in User Blogs

More entries from PracticingAcceptance