Tag: Disability

Trundlebirds Are Go (A Thunderbirds Parody); by Boris (my dad).

Recently I was trying to coerce my dad (Mini’s grandpa) into the use of a rollator. In October he had a fall, lost his balance, and broke his collar bone when he landed heavily on his left side. My mum was asking about walking aids, as one of their neighbours has a mobility scooter. I pointed out that, with them having just moved to a new house without a garage, means of storage would be limited. I also had to remind them that they need to be able to get any equipment into their car, something which I have much painful experience of thanks to ferrying my delightful daughter to and from university.

This started me thinking, something which Mini can confirm as a sign of imminent danger. Transporting a disabled person around takes a lot of planning. Suddenly I saw in my mind’s eye an episode of Thunderbirds. Picture, if you will, plenty of specialist equipment, needing a military level of planning for the task at hand, complete with a secret Island base to store and prepare the equipment.

Welcome then to White Rose Rescue (Edit: the White Rose is the symbol of Yorkshire, stemming (get it, stemming!) from the War of the Roses, where Lancashire (red roses) and Yorkshire (white roses) poked each other with swords for a bit. The hostilities continue to this day), otherwise known as Trundlebirds. This is run by the T’Racy family (Yorkshire joke), and has equipment suitable for everyday situations. All this equipment is stored in a secret bunker (well, ok, garage). Our garage even has a remote-controlled power door. However, none of the trees next to the driveway move, and are more likely to damage the equipment than be damaged should you collide with them.

The available equipment is as follows:

Trundlebird 1 (mobility scooter). This is a rapid access ship designed for local missions. It has suspension so that the operator has a comfortable ride, and also has useful features such as a shopping basket and brakes. Many a successful mission to the local supermarket have been carried out successfully, to date.

Trundlebird 2 (car). This is the main equipment transporter. Equipment appropriate to the mission can be loaded and used where-ever, accommodating Trundlebirds 1, 3, 4, or 5. It allows multiple occupants to travel together with certain combinations of equipment, even if they ride on the roof.

Trundlebird 3 and Trundlebird 4 (rollator and manual wheelchair respectively). These are individual piece of equipment for non-local missions and can be loaded into Trundlebird 2, but are rarely both taken on a mission at the same time due to the fact that it is somewhat difficult to use both pieces of equipment simultaneously.

Trundlebird 5 (Blue Badge, allowing legitimate access to disabled parking spaces in the UK). This is the satellite that controls the deployment of missions, albeit without the orbiting part. This is most useful for missions using Trundlebird 2. Although the Blue Badge is technically not a machine, it is most important when trying to get a disabled parking space as near as possible to the mission location. This allows rapid (or relatively, at least, these things are complicated) deployment to the scene of the action.

Trundlebird 2 has recently been upgraded, but unfortunately not to a Porsche. The previous version allowed the transportation of Trundlebird 6 (the eponymous powered wheelchair used by Mini), and it even had a special loading ramp. The whole set up failed spectacularly as you could not get everyone, Trundlebird 6, and the ramp into Trundlebird 2 at the same time. This has been alleviated as we now rarely have to transport Trundlebird 6, because she wanted to be “independent” and “get married” or something.

I have opted to be the head of the organisation because I am the driving force; I do most of the driving. I suppose I could be the chauffer, making me Parker. However, I only have a Ford rather than a Rolls Royce, and I can’t distinguish pink cars from grey ones because I am colour deficient (which has led to some interesting situations itself, including me being convinced that a grey rabbit was actually green. (Edit: this really happened)).

At least for myself and Mini’s Mum (Minimum?), we have the option of using Trundlebird 2 and all the different equipment. Planning involves selecting the correct item for the mission, and then starting out immediately. Mini can set out on a local mission, but missions further afield need planning. These are dependent on such things as bus time tables, accessible vehicles, and being able to convince the train companies that you really do want to travel tomorrow and unfortunately didn’t buy the levitation upgrade.

Well, I’d better get on with planning the next mission as we need to pick up some prescriptions for Minimum from the local pharmacy. Trundlebird 1 will be best. I’ll just go and open the bunker…

F.A.B. Mini

Trundlebirds

What Came Before.

Given that the title of this blog is Diary of a Disabled Person you could be easily forgiven for thinking that discussing my life prior to disability is somewhat irrelevant. However having had many conversations with able-bodied people who accidentally discriminated against the disabled and pleaded ignorance, I have been able to reflect on my own actions before disability was a factor in my life.

The saying that “you never imagine that something like this could happen to you before it does happen” is clichéd, but it is also true. Before a virus decided my brain tissue looked like a tasty meal, disability was something other people had to deal with. Of course had you asked me, I would have thought myself to be highly inclusive and non-discriminatory, a result of my ignorance. I realise that in my time at school I have probably obstructed a corridor, left someone disabled to struggle with a door, and stepped across the front of a wheelchair without a second thought. I probably spoke to someone in a patronising tone or ignored them altogether in favour of speaking to whoever they were with. I certainly never stopped to consider that I could enter buildings that wheelchair users couldn’t, by virtue of the fact that I could climb up steps. Had I been old enough to drive chances are I would have parked over a lowered kerb. My parents brought me up not to misuse disabled facilities like toilets and changing rooms, but other than that, I probably caused many disabled people a headache or two.

All of these little annoyances that now occur in my daily life I have probably put someone else through and while I hate to make excuses, I would say that most were a result of ignorance. No one in the family was disabled at the time, none of my friends were disabled, and I wasn’t disabled; I had no experience to learn from. This is why I try to have a little patience with others when they simply didn’t know or realise that what they were doing would cause me extra trouble, particularly if they are genuinely apologetic and help me resolve the issue when it is brought to their attention. I will
sometimes try to reassure them that I used to do similar things out of ignorance myself.

There are however, a group of “ignorant” people that I find difficult to deal with. There are those who take exception to me having a problem with blocked access routes, and neither apologise nor help me resolve the issue, often giving me a mouthful of abuse for daring to burst their precious little bubble in the process. Many car drivers will move forwards to clear a kerb drop only to roll back over it once I have passed, leaving it blocked for any other wheelchair users. Others tell me they’ll only be there a minute and to be patient, despite the fact that this attitude can make me late to wherever I am headed.
Then, there are the worst of them all; the people who park in disabled bays, and use their changing rooms and toilets who don’t need to, usually because they want to take their pram/trolley/shopping bags into a larger room with them, and not when all the other facilities were already in use. These people are invariably the rudest and most inconsiderate, and certainly cannot plead ignorance when there are signs everywhere highlighting that disabled people should have priority access to those facilities. I knew better than that as a child, and I know I would never have been that inconsiderate
as an able-bodied adult.
I believe genuine ignorance to be a forgivable reason for accidental ableism. However when people choose to carry on impeding the disabled by continuing to do things they know are ableist, neither apologising nor helping me to rectify the issue or simply disobeying the signs displayed clearly around the facility, I cannot accept ignorance as an excuse. It is these people who are truly ableist and shouldn’t get to hide behind half-hearted excuses to avoid responsibility.

International Day of Disabled People.

My blog is called Diary of a Disabled Person, so I could hardly ignore the International Day of Disabled People, could I? I actually marked the occasion yesterday by attending an event hosted by Leeds City Museum, celebrating the empowerment of disabled women. I am only marginally offended at not being asked to speak.

One of the first people to speak to me when I entered the room was none other than the Lord Mayor himself, accompanied by his wife. I was blown away to see such an important figure at such a low-key event, but it was a very encouraging sign. After the mayor returned to his other duties I was helped to a cup of coffee by a very friendly member of staff, who also pulled out a seat to leave room for my wheelchair. That was when the string quartet in the corner began playing Christmas songs. I had great difficulty in stopping my pinky finger from being held aloft as I sipped my drink.

 

The Lord Mayor opened proceedings with a self-deprecating speech about how he felt that he, an able-bodied man, wasn’t the most appropriate opener for an event about disabled women. This set the tone for what was to come perfectly.

First up was British Para-athlete Kare Adenegan, Young Sports Personality of the Year and holder of the world record for the fastest 100 m wheelchair sprint, having usurped Hannah Cockroft’s record earlier in the year. She talked about how she was inspired by Hannah Cockroft’s performance at the 2012 London Paralympics, but that her school weren’t equipped for wheelchair sports, not knowing how to cope with her needs. Eventually she found a coach who did have those resources and skills, who encouraged and trained her. That coach must have done something right as in her first season as a junior para-athlete she was ranked within the top 10 in the world. In 2015 she competed in her first senior championships, achieving 2 bronze medals. In 2016 she went to Rio, where she won silver and bronze medals, just as she had done in the world championships that same year. Finally in August 2018, mere weeks after breaking Hannah Cockroft’s world record, she landed her first senior gold medal at the European championships in Berlin. There didn’t appear to be any hard feelings between Kare and Hannah, as footage shows them holding hands afterwards.

If these achievements weren’t enough to make us all feel inadequate on a Monday morning, she’s also doing her A-levels, and plans to go to University while maintaining her sport career.

As her segment drew to a close, she said one thing which I found incredibly relatable; “Disability has allowed me to have so many opportunities that I wouldn’t have without it”. This is a sentiment I have expressed several times before, and I agree whole-heartedly.

Next was Hayley Mills-Styles, a thread artist who uses and teaches needlework as a form of therapy and recovery. Her art focusses in particular on mental health, with one piece containing 52 small items representing each week of a year living with depression. She received many emails and messages from people who had seen her art exhibits thanking her for her efforts, as they reflected the feelings of others so accurately too. If nothing else, it seemed that people were comforted in knowing that they weren’t alone in their experiences. Hayley has also produced studies of how she ate when depressed, performing intricate cross-stitches of various food wrappers.

One of her projects stood out from the others; the Positive Patchwork project, produced by a group with various eating disorders at a local hospital. Although Hayley herself only contributed a small piece to the patchwork, she taught the patients new skills that they could take forwards as a form of therapy, enhancing their chances of full recovery. While the end product was impressive, she specified that it was the making of the patchwork that was the most important, as this was the therapeutic part.

Hayley was followed by Susan Hanley, a Leeds resident with a similar needlework business called Leep1. Susan is heavily involved in campaigning for disability rights, raising awareness of ableism and tackling hate crime, and regularly corresponds with local political figures. In 2010 she was voted Yorkshire Woman of the Year and is also a graduate of the Tomorrow’s Leaders Programme, a programme that helps disabled people gain skills in activism and leadership, skills she has used as a member of the People’s Parliament. Perhaps my favourite of her efforts though was arranging disability-friendly club nights at various nightclubs around the city, allowing disabled people to go on a night out without worrying about accessibility. It seems that in the midst of all her hard work, fun is a vital element of her life.

Finally came Sue; unfortunately I didn’t catch her last name. At one time Sue had normal vision, but then a viral infection of the optic nerve of her left eye induced inflammation, resulting in the steady loss of eye-sight in her left eye. Then, one morning, she woke up and could only see a solid wall of yellow. It was the last colour she ever saw.

The same virus that had blinded her left eye had now invaded her right eye, and soon her sight was lost. This would be tragic for anyone, but for a talented and passionate artist this could be seen as career-ending. But not for Sue.

Sue realised that she could feel the indentations left on paper by a pencil, and taught herself to draw with her right hand by using her left hand as a guide. Using this new skill she went to college, and then to the Bradford School of Art, but became frustrated as she could never see or fully appreciate the finished piece, only segments of it. Thus she turned to ceramics and 3D sculpture, something which relied on structure, shape, and texture, all of which could be experienced without vision. Thus she graduated with her degree and has continued to produce art; art which often prominently features the colour yellow, a colour indicative of both happiness and disease. Even for someone like me who tends to take things at face-value, the significance of that colour to Sue is clear.

Afterwards I stayed for a while, chatted with those around me and handed out leaflets for my blog. Rounding off the day perfectly was the view I got as I left the museum, before hurrying home to get this written and recorded.

 

 

Pain Pain, Go Away.

Unless you have been sleeping under a rock because house prices are soaring you will probably be aware of the recent opioid crisis in America where shocking statistics showed the true extent of opioid use in the USA, and the detrimental effect this was having on some people’s health. The backlash lead to doctors restricting patient’s access to opioids, particularly for long-term users. Almost immediately a huge debate sprung up between two communities; those who were concerned about the issues caused by long-term opioid use, and those with chronic pain who were now struggling to access painkillers, making day-to-day life significantly harder.

For pain relief I rely on medication traditionally prescribed as anti-depressants with two such tablets working together to boost the effects each other. On the worst days I have to rely on paracetamol and aspirin, despite aspirin aggravating the symptoms of my asthma, to control my pain levels. I was initially prescribed codeine for these occasions but as it transpires I am intolerant to codeine. This means that some days I just have to accept that the pain isn’t going to subside, which is a truly unpleasant realisation, but fortunately is not too regular an occurrence to cause me any great concern.

The one and only occasion on which I have used morphine, the mother of all opioids, was when I had a gall stone wedged in duct between the pancreas and small intestine blocking the passage so that no matter how hard my muscles contracted nothing was passing through. If this sounds like it might be painful I can assure you it was agony, especially having only had surgery the week before leaving the scar tissue fresh and tender, and it took a hefty dose of intravenous morphine to get the pain back under control. What I realised after taking the morphine was just how effective it was; my chronic pain which had been lurking in the background for several years was gone. Completely.

Suddenly I came to realise just how much of a relief it was for the pain to totally stop, even for a short time (everything they say about sudden realisations while high is true). Paracetamol might have dulled the incessant aching to a background inconvenience but the pain was still there. With the morphine, my head didn’t throb for the first time in years. My muscles weren’t permanently telling me they wanted to rest even as I was resting. It was quite the come-down.

If it is frustrating for me not to have access to the most effective painkillers for my condition out there, what it must be like for those who haven’t even got access to the less effective alternatives that I use is unthinkable. The chronic pain community are struggling to get access to any pain relief at all on a long-term basis, meaning they’re left to cope with horrendous conditions without any help. The side-effects and risks associated with long-term opioid use are well known and understood by the chronic pain community but given that they already have to live with chronic pain, the risk of side-effects in the future is worth it to be without pain now.

There are risks and America cannot continue on its current opioid usage and not expect to see the effects. However denying people the right to have a life worth living, a life not destroyed by debilitating pain, is equally horrific. Those with chronic pain are not asking for anything unreasonable; they are asking for life.

My Family, Our Needs: My Article is Available Now!

Recently I wrote an article about job-hunting as a disabled person for the website My Family, Our Needs. It was published today and you can check it out here:

https://www.myfamilyourneeds.co.uk/emmas-job-hunting-journey/

To those of you who have already found my blog via this article, welcome! Please do like and subscribe to get brand new content every Sunday (and sometimes even in between, because I’m nice like that).

A Blessing From The Internet.

Social media is frequently lambasted as being anti-social, unwelcoming, and full of arrogant over-sharers who feel the need to share every last second of their lives with the internet (let’s not forget the self-important bloggers who take this to a whole new level). It’s been blamed for crimes and radicalisation, and is associated with spreading fake news and false evidence that backs up conspiracy theories such as the world being flat. I can assure you that the world isn’t flat because if it was, it would be a damn sight easier to navigate from a wheelchair.

All social media sites have faced their fair share of criticism, whether it be for selling personal data for profit, or altering photographs so significantly that the people in them look more like tall Barbie dolls than they do actual human beings. Perhaps the site that has been the subject of the most controversy though, is the one that allowed the president of the United States to discuss the ever-important issue of covfefe with the public. I am of course referring to Twitter.

I didn’t set up a Twitter account until February 2018, mainly because I had heard so many stories of horrendous trolling and abuse that I didn’t want to become embroiled in the supposed melee. However, I decided reaching out to Twitter would be a cheap and easy way of introducing more people to my way of thinking, so I set up an account while mentally preparing myself for an onslaught of far-right conservatives telling me I would burn in hell for the heinous act of finding Jennifer Lawrence attractive. I was pleasantly surprised.

What I found on Twitter was not a bucket-load of prejudice and malice, but a large, supportive community of likeminded individuals who all banded together to help those around them, even when living on opposite sides of the planet (another one for the flat-Earthers). A lot of wheelchair users and chronic illness sufferers soon climbed aboard the Diary of a Disabled Person train, the only train where you don’t have to pre-book a ramp several years in advance to then play an adrenalin-rush inducing gambling game of whether said ramp will even materialise. I also had people with other disabilities and learning difficulties follow me, as well as a large LGBTQ+ community, some medical professionals, a few academics, and somehow I seem to have attracted a reasonably large black community, which is uplifting considering I’m so white that my skin peels upon exposure to moderate sunlight.

It is undeniable that I have faced plenty of trolls, my particular favourite calling me an unemployed scrounger living off of other’s pity, clearly having never bothered to actually read my blog or refer to any of my social media history. He shut up pretty quickly after I had pointed out the fact that I was responding to his Tweet on my lunch break while sat in the office kitchen. I have also been told that disabled people should be left behind in the dust as a result of natural selection, obviously having failed to consider that many disabilities are developed later in life and are not genetic, nor understanding that humans evolved the trait of intelligence, not the ability to walk far.

However, when I compare the number of trolls I have encountered to all the positive support and encouragement I’ve received from everyone else, particularly during rough times, I’ve come to realise that social media is not the ugly dog-eat-dog situation some people would have you believe. It is, from personal experience at least, a useful tool for connecting with others and learning about our differences, and is a great platform to advocate for social change.

If you don’t already, please do follow me on Facebook and Instagram (@diaryofadisabledperson), and Twitter (@WheelsofSteer).