On her way from St Albans to Nottingham, Shona Cobb nearly found herself stuck on a train on three separate occasions. Cobb had booked wheelchair ramp assistance for each required change – but not one staff member turned up to help her. Instead, at one stop, she had to rely on a friendly couple to help her; at another, the only way to prevent the train door closing with her still on board was to stick her foot in it. (https://www.theguardian.com/inequality/2017/nov/15/whats-life-really-like-for-disabled-peopld-disability-diaries-reveal-all)

The above was taken from a revealing article printed in Britain’s Guardian newspaper. For those of us who live with disability everyday it really comes as no surprise. It’s just one of the many challenges that people with a disability must confront everyday. It’s not just public transport that is the issue. For example in the article  a guy with Parkinson’s explains how he struggles just to get in a pub because people think he is drunk. There are no disabled changing rooms at shopping centres to try clothes on  and deaf people are for ever receiving phone calls even though companies that call them have it on file that they are deaf and to text or email.

I thought through my week and wondered if it would make for interesting reading. On Saturday, for example, I woke in a panic because I realised for my meeting on Monday I had forgotten to book either interpreters or captioning. Booking communication supports is the bane of my life. I am sure other Deaf professionals will tell you that they have to be supremely organised. It is one of the main reason I have all of my communication support contacts on SMS, email and even Facebook Messenger. Facebook message to Barney at 9 am Saturday. “I’ve got a ten thirty for two hours on Monday. Can you please check if you can serve. In the meantime I will get it into the online system.”  Barney is, as always, ever obliging and saves me and the day. For good measure he sends me a photo of his new baby … Cute indeed.

It’s late Saturday afternoon and teenage son number 2 finally gets out of bed.  Comes down stairs and stomps around as teenage kids do. Shirtless and in shorts showing the tops of his underpants. He mutters and mumbles something that I cannot understand. He mutters and mumbles something again and adds a few sloppy signs to his message. I tell him that after all these years with Deaf parents he should know how to communicate.  Eventually he gets his message through. Something about not being home on the weekend and needing money for his Myki card. I’ve just read out what I wrote to him. He tells me he wasn’t even home last weekend, and that is true. But it is something that happens very often. 3pm is the new morning and muttering is the new way of saying “I’m skint give money.”

It’s Monday now and I have missed breakfast as I often do. Travelling a long way to work everyday I often try to grab as much sleep as I can and get out of bed as late as I possibly can. Quick coffee and quick shower and I am out. I arrive at work, do the morning stuff and take my phone with me to the Café to respond to any number of emails while having my bacon and eggs. As I am ordering some guy I’ve never met strikes up a conversation with me.  “Please sir, I’m really not in the mood to lip-read strange people.”

I really, really want to tell him this. Instead being the polite chap that I am I try my hardest to communicate with him. He is oblivious to the fact I am deaf. I understand less than 10% of what he is saying. It’s only because he is pointing to photos of items on the menu that I work out he is telling me what he likes to eat. I nod sagely and agree with him that those things are indeed yummy. He gets his coffee, salutes me with it and he is gone. Meanwhile while ordering I didn’t hear the questions from the waiter. I end up with fried eggs instead of poached, no mushrooms and a latte instead of a long black. It is an ominous start to the week.

Back in the office I am frantically getting ready for my meeting with my client. I need two computers. One to do the data entry and one for the captions. Someone had borrowed my laptop charger, unbeknown to me. I notice at the last minute that the laptop that will have the captions is nearly flat as a result. Lucky for me the client is late so I steal another persons charger and get myself set up. The client comes in and we are away.

I welcome the client in. I explain that I am deaf and the lap top will be doing magic tricks and typing everything that they say on the screen. It’s really good I say and I use it all the time. So we start and the captioner informs me she can’t get any audio. I apologise profusely to the client and assure them it will be fixed soon. It is fixed but the captioning is going off screen and I cant read all that is being said. I apologise again and the captioner fiddles with the formatting. We end up having to shut down and start again. 15 minutes later it is all sorted. Lucky for me the client has the patience of a saint. At the next meeting the client has a heavy Indian accent and the captioner struggled to understand them. I tell you that one was hairy but we managed somehow.

It really is no wonder that when I come home I am absolutely buggered. Its hard work. It is constant concentration. I supervise staff and have to lipread them all day. Don’t get me wrong they are great. They try to ensure I miss nothing and do everything that is needed to accommodate my communication needs. But it is tough and its tiring. On weekends I sleep a lot.

You know the world really is not designed for people with a disability. To fit in we have to work very hard. We have to deal with an awful amount of ignorance. There are also wonderful people who just accept and adapt as required, comfortably and naturally. But the weird thing is the ones that work with disability, often don’t get it and are the worst. I will end my little diary with this story.

I have a client who has a rare condition. So rare it does not even have a name. It’s currently the subject of intensive research to identify a mutant gene and give it a name. The end result of the condition is multiple disabilities that manifest in cognitive and physical challenges.

I assisted this client last year. They got a lot of support. Assistance for travel, care, physio and  occupational therapy to name a few. There was support for assistive technology and some minor home modifications. The support was quite comprehensive.

As it is we have to review support every year. There are often delays in getting some support. Particularly for equipment, home modifications and technology. If this happens this support is rolled over to the new support plan. So in reviewing the support this is what I did.

I sent the final recommendations away for approval. The support was approved but to my horror all the equipment for home modifications were removed. I was horrified.  This stuff helped the client get in and out of the house. Have a shower, go to the toilet and so on.

I swore out loud in the middle of the office, several times. I got hold of the person that made the decision by text chat and demanded to know why. They said that because the “Rare Condition” had no name they could only go by the diagnosis that was listed on the computer, intellectual disability and therefore they would not fund the equipment and home mods because there was no listing of physical disability.

I pointed out that this was the case last year but all support was still approved. I pointed out there are any number of reports in the data base that list the disabilities and support requirements. I pointed out the condition did not yet have a name but the result of the condition was multiple disabilities. I said that following the logic of the decision that was made if this person had been a wheelchair user, but the system only listed the intellectual disability, that the decision just made was akin to taking away the wheelchair!

“Look”, said the person in power, “The supports been approved as it is. If they don’t like it they can appeal.” And that was it.

It was left to me to have to break the bad news to the client. Why? Because someone on a power trip didn’t want to consider the evidence in front of them, didn’t want to admit their error and didn’t want to have fix it. It’s just disgusting. This is the hidden shit that people with disabilities confront everyday. My little challenges are really just that – little!

We have such a long, long way to go. It is scary!