now i am mainly in wheelchair aka kermit the wonder chair due to eb the evil back, i am learning a great deal about people and ‘accessibility’.
i wrote this for Santa Ian, whois one of the dearest people i know, post his amazing work at the Special Olympics. Ian never stops being Santa you see – he saw the world needed Santa more than once a year.
i have also had amazing mentors like Jodie, who has taught me so much about disability, independence, rights, and dignity, than i could have dreamt possible, and is an inspiration accordingly.
we need more like them.
- most people are lovely.
- do not put your disabled car parks where the bloody drain is so that we have to go through a sloping ditch. i know next to smokers corner and bins is convenient, but it sucks, smells, and we do care. especially the ditch bit.
- if ONE damn store can manage trolleys for attaching to wheelchairs (yay coles warradale), why do NONE of the major ones at westfield marion have them?
- look, TEST your accessibility parks and ramps and stuff. in a chair. not one with a motor, cheaters. try sweating a bit. see?
- the bag i designed for the back of my wheelchair gets paeans of praise for not tipping chair over – have i thought of selling them pretty please? (engineering one oh one with quilting time == good large bag that doesnt swing…)
- thanks for asking if i need help. i will ALWAYS smile and accept or not as needed. do NOT ignore it and take over if i say no thank you, i can manage.
- otoh, the rough terrain thing, could someone offer other than the frail darling 80 yo lady please? AT THE SCHOOL SPORTS DAY? (ok, you were all distracted with your kids, an normally pretty good, but….)
- oh, could the parents who park behind the canteen in the disabled car park because it is convenient understand i now have to park in the OTHER disabled car park further away from the classrooms in the gorgeous school built in the side of a sodding hill, and it is much harder (and colder, wetter, hotter, see weather issues) to collect my small ones? normally, not a problem – IF YOU NEEDED TO! but as it is your own damned sodding all get out laziness (unless you have consistently misplaced your disabled parking permit, all five or six of you who do this regularly), then you are damned obnoxious.
- thanks to my teens for patience and understanding about my need for independence but need for help and learning while i learn which is which on which day. ditto younger kidlets, ditto 76yo dad with prostate cancer (sever but in remission joy!)
- once more with sweaty feeling – did you get anyone to test the incline on that ramp? i need sherpas to get up it!!! that does not make you ‘accessible’.
- the sodding step at my chemists is hard enough to navigate with a walking stick – but i am lucky my legs work enough to sort of shove my wheelchair up. but it is a CHEMIST. get a portable ramp, silly!
- i am not deaf, nor am i a dear. nor does my carer (anyone standing near me i am talking to) know what i want more than me.
- my legs work. yes. but i need my wheelchair because the damage to my spine makes standing or walking for long distances not viable/ excruciating pain and days of recovery not being my thing, you see. but oh, yes, being in a wheelchair IS fun, so i must be faking it if my legs work. for the fun.
- i got this car because i can sort of slide/,manipulate my chair in and out as independently as possible. not because i am having that ‘fun’ in pretending to be disabled. thanks for the haughty glares and mutters. yes, i do notice. yes, it does bother me. pig ignorance generally does.your opinion, however, is meaningless drivel, so it is merely your wasting oxygen that bugs me. intolerance isn’t fun cut both ways, is it?
- please, let your child ask. don’t tell them to be quiet or hush them or drag them away, i cheerfully explain yes my legs work, (“mum her legs MOVED!!”), but my back hurts, so i need to sit a lot, and this chair helps me do more than i could before.
- never EVER challenge an eighty year old man to a race when he has an electric wheelchair unless you wish to lose, and lose utterly…no, scratch that, do it. every damn chance.
- the joy on his face as he absolutely wipes you and leaves you in his wake is special….
- you do not know me. so commenting,and this is my all time favourite much regaled tale, with how you would want to kill yourself in my position, how lucky i am my teenage daughter just popping into shops is there to bother helping me, despite the burden i am, is lucky but so sad. such a waste, with how young i am and all, to be trapped in this wheelchair. you couldn’t bear it. (please continue to ignore my stunned attempt to explain how much more mobility and freedom i now have due to wonder chair). please continue to reiterate what a waste my life is now, and how sorry you are for me. you were lucky, my dear lady, that i was in early unsettled days, when i felt almost guilty (my legs work, should i use this thing?), and still coming to terms with the fact i am permanently irrevocably and that’s it folks disabled. so, my dear lady, for what i didn’t say then, for my stunned silence, tell you what, do it. kill yourself if you wish, if that is genuinely how you feel. it is your life. stay the hell out of mine.
- i am disabled, but not unable.
- i want to pimp my chair. steampunk my chair, have a dalek costume for him. i want to dress him up – outfits for formal and informal occasions:)
- i am wondering how to hook my ipad up and make my stephen hawking tribute version.
- anyone know how to carry a hot coffee in a wonderchair? bracket/cup holder engineering genius? geeks need a certain amount of C8H10N4O2 to function.
there will be more along the way. that is enough ranting for mow,i am tired and have the side effects of medication to go wrestle with, a regular fun thing every few days. i DO like a schedule…
Ok Ro, you sure got that lot off your chest, well done on all of it.
It is so easy to put your foot in it while trying to be helpful. Having a disability means that I had to do a lot of adjusting to what life brings. No I’m not in a chair but I sometimes have to beg off and ask women to lift things for me because I just cant lift or push anywhere near like I used to be able to to do. Oh to be “able” again
The other day I was helping a coach in a wheelchair and we had to go down a steep hill. I was being helpful and suggested it might be easier for her to go backwards. See, it was just a simple suggestion. Well it wasn’t at all appropriate because she had done enough travelling backwards when a student took offence at her teaching or whatever and decided to run at her with his car vs her just standing in the driveway. She did about 3/4 of a mile (it was in the UK) slammed to his car bonnet.
So how to offer help to somebody that you think might be in need of assistance.
1. Ask them if they need help. Let them determine if they need it, don’t just rely on your sense of chivalry or white-knighted-ness.
2. Let them determine the How of the assistance. They know what they are capable of and what help they need and how they need it. Not you. They’re in the chair, they’re in command of the situation. Let them tell you how you can help.
3. At all times while offering and providing help recognise their safety and ensure that your need to help doesn’t put them into an unsafe position. eg. a car park can be a dangerous place the way some people enter a vacant space. Don’t leave them stranded where other drivers cant see them. That’s your responsibility.
4. If they want to thank you then let them do it their way. Don’t expect gushing thanks, it just doesn’t happen like that. Think about it from their position. They have just had to give up their modicum of independence and rely on a stranger. They are probably going to be highly peeved at the stupid council or chemist or whatever idiot that failed to provide proper access to the disabled. They might not be in the best of moods because of pain or drugs or both. Know this, they do appreciate your help, they really do, they just cant express it at the time because it is just too hard for them to be in that moment.
That is just some ideas off the top of my head. I’m learning more and more about the situation. Maybe some of this is right, maybe not, but know that I am trying to get better at keeping my inner white knight from pushing me into the fray when it would be taken wrongly as interfering.
1. eHug
2. thank you for telling it how it is
3. thank you for also validating those with ‘hidden’ disabilities with some of your points – having fibromyalgia was not a fun journey and I know the struggles of many with this debilitating condition
4. if you can wrangle a ‘master design’ for your bag I have the contacts to get it mass produced in organic cotton.
K
Are you the Timelady who offered to send me some awesome candles today? I couldn’t access your Google profile. If so, please email me so I can send you my address. Thanks.
Karen
Thank you for seeing where i am coming from. The disability of wilful blindness to those who have disabilities is far more crippling to those who choose to suffer from it, imho…