There is a weird thing in disability circles, people join groups to find their tribe. You know, other people like themselves.
There is this thing about power in numbers, etc. But I wouldn’t want to be in a room with a heap of people with depression. What do they call that?
A goth club?
Never mind!
Those miserable looking goth kids, from the 90’s? Happiest kids you will have ever met. But, some people with disabilities or brain injury have a tendency to compete. No, really!
Oh, you think that’s bad?! I have this!
In reality, it all sucks. People will imagine their experience is something like what you can imagine or worse than you experience. I like to remind people there is always someone worse.
A guy was in a coma for I don’t know how long. No idea the cause of his ABI or how long he’d had it or anything. However, he seemed very happy and smiley despite his lack of ability to keep his sentences on track or contribute in a big way.
In his coma he was kept company by the radio. I do know, he came out of his coma to a song on the radio, “Stairway To Heaven” by Led Zeppelin.
I always love a reason to get out on hellonwheels, my name for my mobility scooter. It’s also a great way for me to connect with people and change people’s idea of what disability looks like.
The adventure on this particular day, was to get to a dental appointment. I wanted to park my scooter inside but not in the waiting area, in anyone’s way, there is a small vestibule with two automated doors to navigate. So, I got a spot I thought was out of the way. Then I stepped back to assess and then saw this, can you see what’s wrong with this picture?
I decided it was still the best place for it. I stopped to mention it to the Covid Nazi just inside the entrance. She was making sure to check everyone in, take temperatures and quiz everyone on the likelihood they could have Covid. Don’t take my Nazi comment the wrong way, it is what it is and I still have not returned from overseas since 1994. Stop asking! It’s really starting to grate.
Anyway, I digress, I mentioned my parking location and suggested if firemen were to attend, they could pick up my scooter to move it out of their way. She said she thought it would be fine but I had to correct myself. “If they are *Hot* Firemen. Come and get me and have them move me on the scooter out of the way” Yes! It’s inappropriate but who smiled while reading that? She smiled, I got to tell her about my blog and I like to think it made her day.
Yesterday I went to the launch of a project I helped with called Opening Doors. I’ve shared the website in the past but in case you missed it. Home – Opening Doors
I met an advocate there, who deals with people who may be in crisis situations and they become her clients. Example: Couple about to take a newborn baby home where they are living in a brother’s garage. They already have a 4-year-old who is in preschool and because I asked questions, you would imagine they could just move into a room inside the house, so what’s the issue? They already have three generations living inside the house, twenty people so, no they are stuck in the garage. The top number one question they would get asked. Are you on the public housing list?
Anyone who is on that list, asks when will they get a home? How long is a piece of string? That is a list you need to be on, but it doesn’t guarantee you will get anything.
So, the significance of one’s home is even more important to anyone with a disability. It’s a place to be safe, to keep one’s precious things, to build important memories, to regroup at the end of the day, to replenish energy, to sleep. Then to get up the next day ready to fight another day.
So, in short, keeping this in mind,
· Brain injury: 47 years
· Moved out of home at 19 years
· Moved lots until 30 years
· Diagnosis of ABI at 34 years
· Since treatment at 30 years, onset of severe disability where I can no longer work and need care.
· Have moved: 4 times!
Keeping in the back of your mind, I had a boyfriend, sorry I thought I had a boyfriend when I first developed my disability. I digress or context done.
As I mentioned my situation to the advocate, how many times I’d had to move since my disability and while in comparison to her clients with the new born baby, I had told a friend that finding decent housemates since my disability had been like getting my heart, soul and wallet robbed by complete strangers. A friend had bitched to me when he had his disability, he had, had to give up his awesome housemates and he couldn’t understand why I had not been more empathetic towards him.
So, I pointed out, while I’d moved four fucking times and had lived by myself for seven years or more, renting. His family bought him a fucking house! Now admittedly his house is in the outer suburbs, he owned the house. No renting.
and now 10-15 years later, he’s moved into an apartment in Abbotsford where he can walk to the city and he still thinks I should be all empathetic towards his plight.
Sound bitchy don’t I? Yeah, the inner bitch comes out occasionally.
I really want to thank you for calling me today to tell me all the things I should be doing. You haven’t responded to any of my friendly messages for months now.
I had some good news to share, but you didn’t ask, nor could I get a word in edgewise. I’ve just had a 4-day weekend on the 4th lockdown in Melbourne, some appointments cancelled I’d been trying to get done since they didn’t happen in 2020.
Fuck you COVID! No, I really mean it this time!
It is imagined that people with disabilities have not been financially impacted, since we don’t work. We haven’t lost work and why should we matter.
Well, I shall tell you how. Allow me.
These days I do take more ‘healthy pills’ than medications so I can live to the at least 65. I can afford to live till then.
herbal pills in wooden spoon with ginger root, Kaffir lime fruit and flower on dark brown wood background with copy space. Above view.
Shut up! I will explain that expiry date another day.
COVID has meant everyone and their cat and dog has been out buying ‘healthy pills’ to avoid getting or dying from COVID. It’s a fair call. I can’t blame you all. However, many of my healthy pills I buy in bulk so I can get bulk discounts and pay less over time and because my suppliers have had limited stock, they have not allowed me to do this. I’m not talking about truckloads, just 2 x 200 tablets of magnesium. Just an example.
But I don’t need someone who is not on the ‘coal face’ of living on the edge financially and choosing what I’m meant to do without to ‘help’ me decide I can give up my weekly chiropractor visits.
You all realize I have lost many of my pain management appointments due to lockdown, right. And you want me to deal with a rib out as well. The rib still hurts despite being put back in last Friday. It’s Thursday night as I write this.
So, it’s really shitty when people who are meant to love me are awfully opinionated about what I can do when they are not me.
You know that moment when if there was a statistic that said if there was one person in every family of four to have a disability. The only person in your family who could deal with said disability well, it’s you. Yeah, I knew this some years ago.
Now I needed to ask for a loan, quite happy to pay it back. But without even knowing what it was for, you decide to give me a lecture about managing dollars better. Stop helping!
You are upset, because I didn’t ask how you are. It was hard to get a word in edgewise, and I was already having your opinions and the opinions of other people who are not me to get a word in edgewise.
So, now my days is not done, I don’t have the energy to ‘deal’ with anything else today.
I’m feeling really shitty. My head hurts, my left eye is pounding (the indication of my migraine these days). So, I’m going to bed for a cry and a kip.
Now I need to feel like eating sometimes so I can sleep tonight and get up and do all the things again tomorrow.
Meanwhile, the rent gets paid. The lights go on. I’m not starving and I can put one foot in front of another knowing I don’t ask for help often but when I do, I really need it.
Then, maybe I’ll be able to smile a little. Or I can try and if that’s how you are going to be, please don’t call.
Family is a beautiful and evil thing when you have a disability and life in general, I often feel like my contribution is undervalued or thing’s I could do to contribute to get together’s, it’s assumed I would break things rather than help.
At most Christmas gatherings, I offer to help because I want to be apart of things and not feel like a freeloader, but it becomes easier to stay out of the way and come in later to pack and unpack the dishwasher. I may offer to hand wash (carefully) some things that don’t go into the dishwasher and I’m told very quickly “NO” like I might smash the Fine Bone China cups and saucers.
No, I will not, I hope to inherit a share of those one day. Three daughters, is cups, saucers and cake plates. So, no would definitely not smash them.
Fun Fact: You can put Wedgewood in your dishwasher just without the detergent and likely on a cooler wash.
Sometimes, blogging about the here and now and the most important reason to blog gets lost in all the detail. So, being careful to consider someone else’s privacy.
Imagine being 29 and all you want to do is survive, to thrive, with a pre-diagnosed medical condition, you have a stroke!
Again, not my story, but a friend.
After over a month in hospital, being tested for everything including CoVid19 and with no answers. Sometimes, this is the way. No answers.
Being kept company by parents, day and night so nurses give the best care. The same care they would give to anybody without disabilities or pre-diagnosed medical conditions. No matter what they are. A short stint in in-patient rehab, where physio appointments went cancelled because of the low expectation of recovery. Parents needing to still be there to advocate for their child to make sure they get what they need.
What to do now? Well, the hospital and the patient, to be fair want the patient discharged ASAP. The patient obviously very keen to be home where his parents can arrange the best for their child. Well, adult child and the parents could get a reasonable night’s sleep, to continue to love and care for their child as only parents can.
So, in a perfect world, a caring parent/advocate/carer applies to the NDIA for a change in circumstances, so the patient can go home. Extra carer hours can be utilised to provide adequate care in the home. Plus, some much needed respite for the parents. And sufficient physio and Occupational Therapy to return to at least the bare minimum or return to the same level of independence my friend had in the comfort of their wheelchair, not so very long ago. Is it too much to ask? Is it even possible? I guess we don’t know until my friend is in the best environment for this to happen. Which is clearly at home.
They can’t go home until these things can happen.
I don’t know about anybody else, but I don’t have the funds to pay for these kinds of things, so the NDIA, a government organisation should prioritise these things, no? Let’s see how long it takes for my friend to be able to go home.
And lastly, I’ll leave you with this great quote that I only know about because a great Aussie disability advocate used it.
Disability is seen this way……… “The soft prejudice of low expectation!”
Please share through your networks to show your support. While these stories go untold people get away with providing sub-standard care. Let no single person with a disability be left behind!
Ok, for once I’m not writing about me. Ok, the grumpy old lady in question is not me. I was there and there was a grumpy old lady and for once it wasn’t me.
You know those accessible toilets? The ones with the heavy door (we work at that first) because it’s operated with a button. But I never see the button until I’ve put my whole-body weight against the door and sworn a bit at how hard it is to open and because it’s operated by a button, there is a light to indicate if it’s engaged.
I mean, no one pays attention if the normal lock states if it’s engaged anyway. People still put the stall door and sound surprised when it’s actually locked.
I know, right. I don’t know about anyone else, but I always call out “I won’t be a minute” and I take as long as it takes.
I’m not the one being rude. But I digress, frankly I get access to the accessible loo, I take my bag off and hang it on the strap on the wall and I hang my walking stick on the other. Don’t worry, this will not be a blow by blow account. But, while I’m “busy” the door opens wide and a woman, older seemingly “well to do” looking down her nose at me.
I can only describe this woman or her personality in these words. The look on her face told me she felt her shit didn’t stink. It is a pure Aussie Bogan term at I can’t sugar coat it. There it is.
And I’m 100% sure she looked at my face and thought I was ‘young’ and didn’t belong there. I’m also sure she considered I was on her throne and I should feel shamed enough to just get off. I did not move.
She just seemed happy to stand there in an authorative pose to argue and debate it with me. The damage was already done. She had seen me on the toilet (not that there was anything to see) but no one else needed to see me.
I was ready to suggest if the conversation wasn’t over, she could come in or go out, but could she please close the door. When she decided to leave.
I finished my business and left without another incident. The following meeting with my local DAC (Disability Advocacy Committee) in my local council, I mentioned my fun ‘little’ story of total humiliation.
I learned the lock automatically disables after ten minutes, so homeless people don’t go in there and spend the night and so junkies don’t go in and overdose.
Ok, I get it. But ten minutes, I’m one handed. Have you ever tried working these toilet rolls one handed? That is frustrating too. That is the making of a serial killer.
I know I covered the Barren Spinster thing, but I didn’t as yet cover the dating with a disability thing. Until now.
After a few years of being single, I tried consciously to do the online dating thing.
Sweet Jesus! The Millennial’s! Can we blame them for that?
I mean, I did the clubs thing back in the 90’s, I was out there, I had exposure and nothing. Most of my 20’s, single.
Can you think of the top three questions you get asked doing the online dating? Please imagine my profile mentioned I did not drink, imagine it was something akin to personality. I wasn’t looking or interested in a quick sleaze. I wanted that eventually, but not from someone old enough to by my dad.
Right!
Question 1, What do you do? I tell them I’m retired. (to avoid catfishing, I quickly follow with retired, but poor) and I do advocacy for people with disabilities. Let me tell you what they want? 1. A quick shag, almost on order like Uber Eats. Cringe!
Older guys want Jennifer Aniston, wearing a tiny bikini while lying on the beach drinking a beer.
Are these men A-Grade specimens of man? Deserving of a Jennifer Aniston? Don’t be ridiculous.
There are times when I have to play my disability card to get results. Sometimes I throw it out there and I have to hope for the best, because it can very quickly be taken out of my hands (in this case, just the once) as I can’t control everything once it gets away from me.
You know that time “You attract more bees with honey?” and I’m sure there’s something about putting innocent bystanders in a situation where they witness something happen and you have to hope someone comes to your defense.
Like today for example.
Buses have replaced trams on my tram route while roadworks are being completed. Today, while leaving my acupuncturist, I saw three buses go past and seeing none anytime soon. I walked about three tram stops. I’ve walked further, in fact the whole way home, but I had an evening adventure planned that I had to save some of my spoons for.
So, I saw a bus (tram) pull up to a stop and I stepped it up a little to make it to the bus. If I couldn’t get to the front door of the bus near the driver, maybe I’d make it to the back door. I got to the door half way down the bus and I saw the teenage school boys (I presume they said nothing to the driver to ask he to wait for me, Yes? They had seen me coming) the door started to close, so I put my walking stick in the door. A woman stepped forward to stop the doors closing and yet the bus started to move.
Oh dear!
I tugged at my walking stick; it really was stuck. I could see some people on the bus standing in the isle call and look towards the driver. The bus stopped, thankfully and I put my right foot up on the floor of the bus using my right hand pulled myself up. My walking stick now dangling from my wrist strap.
A woman in a seat near the door moved to get up and I thanked her and told her I was only going two stops. The bus driver appeared at the door behind me asking what was stuck in the door?
I explained, I had wanted to catch the bus and my walking stick had been stuck in the door. He didn’t say anything, he just looked ‘put-out’. He got back into his seat and behind me someone else offered me a seat. Word passed down I wasn’t going far anyway.
Once off the bus, I saw a man in high-vis, when I asked him about the roadworks back in Clifton Hill and if it meant they would be completing the accessible tram stop on this route, he had no idea and had simply gone where he had been told and worse still, did not normally do this area, so really had no idea whatsoever. He just directed every question to the PTV (Public Transport Victoria) website and phone number.
Guess I’ve got another thing to add to my list tomorrow. But it just goes to show, people did come to my aid when I needed it and I don’t ever know who they are.
Now, while you read this post, who had a vision/image of an old lady like Mrs Magoo with the grey hair and grey dress being dragged beside a bus by her walking stick?
Yeah! Me too! That could have gone so much worse as the cord around my wrist often gets twisted on pretty tightly, making it rather challenging to get it off in a hurry.
There was a drink back in the 80’s and I has become part of Aussie Pop Culture references that crosses all things. The ad was for a drink (beverage) called Claytons.
It refers to it being the drink when you don’t feel like having a drink. A drink without being alcoholic. So, this is a post about a Clayton’s holiday. Get it?
About five years ago, I was with an agency that arranged holidays (group holidays) for their clients. I was able to and included on two holidays, which was really nice as I think it’s been about ten years since I actually had a holiday and even then, that was to Tasmania for two-three nights.
So, the group holidays work out to be only a half day drive from Melbourne and only away over night or two. The other client’s range in age from five (one client’s daughter) to sixty-five (maybe). There were two mini buses with wheelchair lifts on the back (two wheelchairs in the back of each) and usually a car.
I usually bags the front seat of the mini bus (I will do a polishing motion on my backside and one of the carers will effortlessly lift me and deposit me in my seat). Yeah, I do that sexual harassment for the ladies. But I won’t allow a male carer to man-handle the goods. (I’m not light these days, but one lady just effortlessly lifted me making me feel so light.)
Being on a little get away with a bunch of strangers and three or four carers means you have a polite but temporary family type experience.
I always pitch in to help prep a salad or something in the evening as we usually stay somewhere we have a shared meal where ever we stay on the first night, as most meals are eaten out.
The first holiday I went to we stopped on the way back to Melbourne at an outer Melbourne suburb for a lunch and a little adventure.
A friend lived there, so I suggested they join me, so I could catch up with them. Said friend had recently been diagnosed with something quite nasty. They are still in that honeymoon stage of diagnosis where they have had the sugar-coated version of their diagnosis. Goes something like this “OH, you only have 3 lesions…”
Note, privacy being maintained here, yeah. This medical condition is such that when people hear I have a brain injury, I tell them, “Hey! It’s okay, this is my bottom line right now. At least I don’t have XYZ.” Because XYZ is degenerative. It gets worse. It gets shitty. I just gets’ worse.
So, this friend joined my little group of holiday buddies and I briefly introduced them to the group. I’m going to say, I’m terrible with names and I’ve been around this group of people with disabilities now a few years, so in a little desensitized re: medical conditions.
My introduction went like this;
“Brain Injury, MS, Stroke, Stroke, Oxygen deprived at birth (Brain Injury) etc, etc”. And I finished with referring to one particular person in a wheelchair (of which there were five) but the last person I pointed to had the XYZ my non-holiday friend has. “That will be you one day” and they paled considerably.
Hell onWheels/Life One Handed 