My Experience Receiving the COVID 19 Vaccine as a Wheelchair User with Cerebral Palsy

Back at the beginning of March, I was lucky enough to get my first dose of the COVID 19 vaccine! I ran polls on my social media and my readers said they would be interested in a post on my experience of the vaccination process as a wheelchair user with Cerebral Palsy, so that’s what this post is. Before I get into the post, I would like to say that I have complete solidarity with my fellow disabled people who have been #LeftOffTheList for priority vaccination and I hope everyone is able to receive the vaccine soon.

In terms of the structure of  this post, it will be split into the booking process, my on the day experience of actually getting the vaccine and then any aftereffects I experienced.

Booking

When it came to booking my vaccination, Cerebral Palsy is in vaccine priority group 6 here in England  (something I found out via friends online who also have CP, not actual government communications *rolls eyes at the disorganisation from our government*). After a little while of group 6 being contacted to arrange their vaccinations, I’d still heard nothing.  Then my mum (who has been shielding and was therefore one of the highest priority groups for vaccination) said I could just book online with my NHS number and postcode rather than waiting to be contacted. I tried that a few times but was initially not allowed to book a timeslot. When the system finally let me in, the first thing I was asked was if I had any specific accessibility requirements (I selected wheelchair accessible, step free access and disabled toilet). I was able to select a timeslot for my first vaccination, but initially couldn’t select a timeslot for my second injection at that same vaccination centre. This meant I had to spend time researching how I was going to get to one of the other vaccination centres. It turned out that I would have to get a short train to the next nearest centre, which meant spending EVEN MORE time researching whether I could actually use that train station. By the time I’d done all of the research, the website had timed out, so I had to go through the booking process again. However, the website timing out was kind of lucky as, at the second time of asking, I was able to book both injections at the same vaccination centre which was in walking distance of my house. I then got confirmation of my vaccination appointments via text.

On The Day

On the day of my actual vaccination, I just walked to the vaccination centre. My maps took me to the car park entrance which wasn’t very helpful. There was also very little signage directing me to the entrance, until I was right in front of the building (which was named with a giant sign on it anyway). When I did find the entrance, there were actually 2 entrances, one down a set of stairs and one on my entrance level for those with mobility issues. The centre had a one way system with those waiting to vaccinated entering via a different door than the exit door used by those who had just BEEN vaccinated. There was also a socially distanced queue outside. Once I was let into the centre, I was checked in by giving my name and Date Of Birth. I was then given some hand gel and told to follow the markers down to the main seating area. Once I was down there, I was asked to sit in the open space rather than the organised seating area so that volunteers would not have to move a chair out of the way in the seating are. Usually this would have annoyed me but, in this context, it kind of made sense in terms of infection control and minimising the amount of objects touched. Then I was  told I was next up and was checked in again (this time I sat opposite someone at a desk with a computer and they moved the chair out of the way  so I could position my wheelchair. This person initially asked for my NHS number which I did not have to hand. So instead they asked for my address, Date Of Birth and some other details in order to find me on the system. I was then directed to the station where I had the injection and where another assistant at a separate computer checked me in again. Then the nurse explained the vaccination process whilst she set up the injection, and I asked her to inject the vaccine into my “non-driving” arm (aka the arm I DON’T use to control my wheelchair). I don’t like needles so I looked away whilst the nurse did the actual injection. I did bleed slightly afterwards but it was nothing that couldn’t be stopped by a plaster. Then nurse then gave me a “what to expect” leaflet and my vaccine card (which she told me to keep for when I got the second dose). THEN she asked if I was driving and this is where it got a little awkward because do I say yes or no? My wheelchair isn’t a car but I’m kind of in charge of a vehicle (I said no, but I think, since my wheelchair is a road legal vehicle, I should have actually said yes). Because I said I wasn’t driving, I was told I could go straight home without waiting to see if I had an adverse reaction.

After Effects

In terms of aftereffects , my main ones were tiredness and shivering alongside an achy injection site and general muscle soreness (I would describe it as similar to my worst days with Cerebral Palsy Spasticity). Those effects lasted about 2 days. I would say the arm soreness was the worst since I can’t actually rest my arms because I have to use them to move my walker and generally get around. I think these aftereffects probably felt worse since I am a terrible patient who has real difficulty following suggestions like “rest” and “do nothing”.

I hope this post gives helpful insight into my experience receiving the COVID 19 vaccine as a wheelchair user with Cerebral Palsy and what you can possibly expect when you receive your vaccine.

Stay Invincible!

Em (Invincible Woman On Wheels)

The Times I Wish I Wasn’t Disabled

This one’s a pretty deep post, but it’s something I think needs talking about. I recently encountered a  scenario which brought up some rare feelings about my disability and my attitude to being disabled, and I’d like to discuss those with you.

Those of you who have been following me the last few months will know I am currently job hunting, a process I have written about previously on the blog. In the last couple of weeks, I had a really good telephone interview, and then the interviewer invited me to visit the workplace to work out some possible accessibility issues they could see. This seemed like an entire sensible request, so I headed up to visit. But the visit didn’t go so well, there were indeed accessibility issues which meant that working at that location was a no go for me.

As I was waiting for my train home, I felt angry and frustrated, to the point where I was wishing I wasn’t disabled and I somewhat wanted to rip my legs off and throw them in the nearest part of the canal. That probably sounds dramatic but this kind of situation is rough to deal with.

It’s rough when you’ve been job hunting forever and finally feeling like you’re getting somewhere, only to keep hitting the same roadblock repeatedly.

It’s difficult knowing you have the skills and qualifications for the job and the accessibility is the only issue. I began thinking “I would have that job if I wasn’t disabled” particularly as this was the second time in pretty quick succession that issues with accessibility had been the reason I hadn’t secured a role.

It’s rough trying not to be noticeably angry when interviewers and employers tell you that accessibility is the issue that stops you securing a role, in case you look like a bad potential employee.

It’s rough trying to balance being happy when employers try to come up with solutions to accessibility issues, with being angry because those issues really shouldn’t exist in 2021.

It’s rough trying not to internalise the issue. Trying not to see it as a problem with yourself (like I was doing when I wanted to chuck my legs in the canal)  and remember that the problem of inaccessibility lies with the system and society at large.

I hope this shines a light on the deeper problems’ inaccessibility can cause, that we can’t just brush it off as an “oops”. I hope it also shows that I’m not as invincible as some might think, I struggle with these confidence issues around my disability just like everyone else.

Stay Invincible!

Em (Invincible Woman On Wheels)

Job Hunting for Disabled People: Combatting Barriers with Unique Skills, From InvincibleWomanOnWheels & Dotted Pages

I’m back! Something a little different today. Firstly, today’s blog is a collaboration with the lovely Helen from Dotted Pages Blog. Secondly, a slightly different topic today. On the heels of my earlier post regarding my own experience job hunting as a disabled person, this post will delve more into the statistics and legislation surrounding disability and employment, as well as Helen discussing transferable skills. 

A little bit of background on why I’ve decided to discuss this and why this is a collab post. I recently happened up Helen’s blog post series on job hunting, and specifically her blog post on knowing your worth in employment and as an employee. She split this into 2 parts; one discussing knowing your worth in terms of the salary you should be earning and another part discussing transferable skills.

This got me thinking about how these different aspects are relevant or different when considering employment for disabled people, this is obviously something that is currently very relevant to me personally as I am a disabled person job hunting as we speak. I was also interested to discover whether the situation was different on opposite sides of the world. As I am UK based and Helen is based in Australia, it was a no brainer to ask Helen to join me in writing this post.

Statistics

Right, onto the stats! According to a 2019 report by the Trade Union Congress (TUC), the disability employment gap in the UK is 30%. However, a Scope report using data from 2020 suggests that disabled people are more than twice as likely to be unemployed compared to their non-disabled counterparts. This sharp increase suggests that COVID is disproportionately affecting the employment chances of disabled people.

This disparity does not stop once you’re employed, the same TUC report suggests that the UK disability pay gap is 15.5%, which means that disabled people are paid around £1.65 an hour less than a non-disabled counterpart in the same role at the same level of the same company. That is approximately  £3,003 a year.

Obviously, this likely varies depending on the specific disability but that’s still a pretty large ‘standard’ wage gap. That of course doesn’t consider the fact that disability isn’t the only thing that could affect salary, there are multiple facets and areas of identity to consider. One specific stat that stood out to me is the fact that disabled women face a  bigger pay gap than both disabled men and non-disabled women, this is obviously particularly concerning as I am a disabled woman myself. Sooooooooooo all in all, I have to honestly say the landscape doesn’t look too rosy as a disabled person job hunting in the UK.

Unfortunately, the prospects for disabled job seekers is no rosier on the other side of the world. As of 2019 statistics, there were just over two million disabled Australians of working age. Of these, only 47.8% were employed. This is compared to 80.3% of employment amongst the same group of people without disabilities.

While these are some disheartening statistics, it does look like (pre-COVID anyway) things are improving. In 2018 in Australia, 11.4% of people with a severe or profound disability had full-time employment. While not a high number, this is up from 7.9% in 2015. Hopefully, then, COVID doesn’t stop this upwards trend!

In terms of the disability pay gap in Australia, the starkest data I could find states that for every $1.00 a person without a disability earns, a disabled worker only makes $0.66. That’s a huge disparity, and one that is further compounded by the way workplace laws are geared to those without disabilities. For example, complications such as chronic pain are not easily dealt with by the standard sick-leave structure. 

Legislation

So what is the legislation that’s supposed to stop these kinds of gaps from happening? and what information can you clue yourself upon to know what you’re entitled to as a disabled person job hunting or already employed?

Well, firstly it’s best to understand how disability is defined, as that’s the basis for all definitions of disability within employment law. In the UK, the Equality Act 2010 defines disability as:

“a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.”

In this, ‘substantial’ means something that is more than minor or trivial, something which means it takes much longer to complete a daily task such as getting dressed. ‘long term’ refers to a condition which lasts for 12 months or longer.

The next thing would be to understand where discrimination can occur, these are the areas where the Equality Act 2010 is in place to protect against discrimination. Scope suggests that there are 3 main areas where discrimination can occur:

Application

Not being selected for an interview due to your condition would be discrimination. However, it is difficult to prove discrimination on these grounds (probably because writing “we didn’t select you because you are (for example) in a wheelchair” is a little too obviously ableist for companies to get away with writing, and they know that).

Interviews

If you are refused disability adjustments that you request at an interview, that is discrimination. Whoever is interviewing you is also not allowed to ask you about your specific condition or its effect on you, except for specific limited reasons. Those limited reasons include when it relates to your ability to do the core aspects of the job, or when discussing what adjustments may be necessary for you to perform as well as others in the recruitment process.

At work

Once you’re employed, if your employer does not make reasonable adjustments (such as allowing you to undertake flexible working or different duties to colleagues) which allow you to consider your disability and still do your job, that is discrimination.

You also need to be aware of salaries as a disabled person to make sure you’re being paid what you should be. In the UK, the minimum wage varies by age and what kind of role you are in (such as whether you are an apprentice). I won’t go through every specific difference (but I will leave a link to the April 2020 figures). Overall the figures range from £4.15/hour (apprentice) to £8.72/hour (National Living Wage) so keep those figures in mind when looking at salaries whilst job hunting. However specifically as a disabled person, also keep in mind an average salary for an employee at the level and the role you’re applying for and compare that to the salary you’re being offered, to ensure you’re not being underpaid as a disabled person (which the earlier figures from the TUC would suggest is likely).  

However, it’s not all entirely doom and gloom, there ARE schemes set up to help disabled people get into work in the UK. One of these is Access to Work which is available for those aged 16+ who live in England, Scotland or Wales and have a physical or mental disability or health condition which makes it difficult to get to work or do specific parts of their job. You must be in a paid job (or about to start/return to one). Access to Work can provide support such as helping to assess whether reasonable adjustments could be made to your workplace to make it easier for you to do your job. It could also provide a monetary grant to pay for things such as:

  • adaptations to equipment
  • special equipment/software
  • British Sign Language interpreters and video relay service support, lip speakers or note-takers
  • vehicle adaptations
  • taxi fares to work or a support worker if you cannot use public transport
  • a support worker or job coach
  • personal protective equipment for your support worker, if you employ them yourself
  • disability awareness training for colleagues
  • cost of moving your equipment if you change location or job

That’s all for the legislation and schemes in the UK, I’ll leave it to Helen to tell you about things from the Australian side.

Australia has anti-discrimination laws at both a federal and state level. On a national level, we have the specific Disability Discrimination Act 1992 which covers a huge range of disabilities from physical or intellectual to those that can be caused by a long-term illness. This act covers not just employment, but any other area where discrimination may occur, such as the refusal of entry at a venue or education.

The state-based anti-discrimination tends to be broader brush than this, covering all groups who may face discrimination, regardless of the cause. It is interesting to note these laws often also cover carers, who can face discrimination when job-seeking due to their commitments to dependents.

As Emma mentioned earlier, however, there is a large gap between discrimination being illegal, and that making a material difference in people’s lives. Potential employers aren’t going to come out and say that a disability is a reason they won’t hire you, even if it’s their deciding factor.

While I don’t know enough about it to go into as much detail as Emma has, I am sure there are programs and funding in Australia to assist disabled people in the workforce. I am, however, aware that our National Disability Insurance Scheme (NDIS) has been criticised hugely since its inception, so I don’t think there is currently much political appetite for this sort of assistance.

Bureaucracy and muddy legalities don’t seem them to be much practical help when finding work. It’s therefore important to focus on the things you can positively impact, your skills and suitability for the job.

Transferable/Unique Skills

Now, away from all the stats and documentation. Let’s discuss skills! Specifically transferable and unique skills you can bring to the table as a potential employee. I think this is something that really important for disabled people to focus on, particularly given the unique way we HAVE to approach the world (to work through everyday inaccessibility.)

With stats, I have already discussed how disabled people are disadvantaged getting into employment. Whilst transferrable skills are something I discussed a little in my job-hunting post, I’ll hand over to Helen for the fuller discussion.

When searching for work, something a bit different or interesting on your CV or application can be a great way to get recruiters interested in meeting you to get more detail. The trick is to frame your point of difference in a way that highlights it as a relevant strength.

For example, if your condition limits your stamina, so you have to plan frequent breaks into any activities or travel, you could talk about your ability to work to strict schedules and timeframes. If you have to take extra time to plan a trip due to accessibility issues, you are a forward-thinking problem solver.

Take the strengths you’ve developed in your everyday life and apply corporate-speak to them. It’s no different from an able person talking about teamwork from their years of playing sport. In fact, it’s a lot less generic and predictable- which as I mentioned above, can be a great way to stand out!

Employers want to know the people they’re taking on are up for a challenge and have the ability to push through when things get tough. Well, you’ve been doing that your whole life! You’re detail-oriented, dedicated and determined, which are all great qualities to emphasise in a resume.

Don’t sell yourself short, and while it can be really hard, especially if you’re struggling financially, remember that if an employer doesn’t want you because of who you are, you probably wouldn’t be happy there. I know this isn’t always the most helpful piece of advice, but it is still important. You spend a lot of time at work; finding somewhere you’re comfortable and happy is important.

Everybody has something to offer, whether it’s your positive outlook or the fact you’re a programming whiz from necessity. The trick is highlighting those skills effectively and showing that the positives outweigh any perceived negatives.

Searching for work is hard enough without a disability. What I’ve learnt during this collab has shocked me about the realities of being a disabled job-seeker. I’m also very humbled to have been approached to work on this post. For me, job hunting shouldn’t be made harder by who you are, what you look like or how you get around. It’s about what skills and knowledge you have to offer.

I hope you’ve enjoyed this (lengthy) look into disability, employment and the differences between the UK and Australia.

Stay Invincible!

Em (Invincible Woman On Wheels) & Helen (Dotted Pages)

My Disability Privilege: Discussing Invisible & Visible Disabilities

Something a little different from me today, discussing a recent post I saw on social media and how that made me think about the way people with invisible disabilities are perceived compared to those who are visibly disabled.

For those who don’t know, I have cerebral palsy spastic diplegia which means I cannot walk unaided.  I am a full-time wheelchair user, at least when I’m outside. I’m probably what you would consider to be your ‘stereotypical’ disabled person; everyone sees a wheelchair user and knows they’re disabled, it’s almost the basic level of disability knowledge. However, I recently saw a Facebook post  that my good friend Lizzie had reshared. She’d originally written it before I even knew her, about an incident that had happened regarding perceptions of her disability and how it made her feel. This post made me realise a level of privilege I have in being your ‘stereotypical’ disabled person. So, I decided to let you in on that realisation and have a bit of a chat with Lizzie more about this issue.

In her post, Lizzie describes the incident; a stranger in a pub pulled her friend aside and said Lizzie “couldn’t really be disabled” because he’d seen her get up from her wheelchair and walk to the jukebox and back. It was then that I realised others questioning my disability is something I don’t really experience as no one sees me out of my wheelchair. The most I’ve ever gotten is “oh my god you’re sitting” said to me once when I transferred out of my wheelchair, but that was more hilarious in its ridiculousness than it was offensive or upsetting.

The other kind of privilege I felt is when Lizzie mentioned that she has multiple conditions. I felt oddly privileged that I only have one condition and don’t have to balance the competing impacts of multiple conditions, this really opened my eyes to what she goes through. Lizzie herself says that until age 19, she would have been considered to have an invisible disability, although she sometimes used a walking stick for both mobility and to help with her visual impairment (that whole thing I mentioned about balancing multiple conditions); people would assume the walking stick was for aesthetic reasons! She would often need to take breaks while walking and saw coffee shops as a good excuse to sit down without drawing attention to herself. On one day she could be walking around town perfectly ‘fine’, the next she might be unable to wear shoes or walk without her walking stick. This process of going from being able to walk to not could even happen within the same day. Her teachers struggled with the variability of her condition and what that meant for her ability to do things. Throughout her teenage years, she was regularly asked probing questions and was even told to give the stick she was using back to the ‘real’ owner. This struck me, as I’d heard of many instances where disabled people were told that they weren’t disabled and to give mobility aids back, but to hear it has happened to one of my best friends really brought it home how prevalent these incidents are.

Lizzie discussed that disability has no ‘look’; you cannot tell if someone is disabled just by looking at them and being a wheelchair user does not automatically mean someone is paralysed or paraplegic. This was one of things where, as a wheelchair user, you read it and then yell “THIS!” at your screen.  As an ambulatory wheelchair user, I can stand to reach items on higher shelves in the supermarket, and when I do that people do a double take. It’s almost as if their brain glitches for a second because they can’t comprehend the existence of an ambulatory wheelchair user. This is an experience that Lizzie echoed (another “THIS!” moment).

She said that as a teen who was invisibly disabled, she never felt ‘disabled enough’ to claim that identity because even we as disabled people are taught this ableist idea of having to meet a certain level of disability to be able to claim, “I am disabled”. For Lizzie that meant battling with the fact that she was visually impaired, but it wasn’t THAT bad, or the fact she had limited mobility but COULD still walk mostly unaided. This left her feeling like she didn’t fit into either category of able bodied or disabled. That was until she became more disabled and realised, she’d missed out on a whole disabled community. Now she wishes she’d stopped trying so hard to pretend to be abled when she wasn’t and embraced the disabled identity and community earlier.

Lizzie also talked about a topic that I often try to show here, that being disabled doesn’t mean you have to stay at home. If you’ve been paying attention to the content of this blog, you’ll know this is also a message I strongly support. I’ll be on a train, or at a pub or a concert or an MMA show (pre COVID times obviously) just living my life and I make no apologies if that breaks your preconceived ideas of disabilities. Lizzie pointed out that she (and other disabled people) often has to forego certain activities so that energy can be used to attend or do something else she REALLY wants to do, so if you see a disabled person out and about socialising, likelihood is they’re sacrificing something else to be there, so PLEASE just leave us to socialise in peace. Oh, and while we’re here: Not all disabled people have carers, especially not 24/7. So, if we’re alone, likelihood is we’re fine, so just leave us in peace please, unless we ask for your assistance.

Something else that Lizzie said is that she has mobility aids because she NEEDS them, not because she’s trying to play the benefits system or get pity. This was another “THIS! *slams hand on table*” moment. I beg, can we PUHLEASE just throw the whole ‘disability scrounger’ narrative in the bin with the rest of the hell that was 2020?! While we’re discussing narratives and ideas around disability, Lizzie made the point that mobility aids aren’t a detriment or a sign of us giving up, they are an improvement. For example, she could only walk around 10 minutes unaided (or more if she pushed it, but she would regret it the next day and be unable to do much at all) compared to around 25 minutes with a walking stick. She can technically walk without aids now, but it’s exhausting and wastes energy for the purpose of moving just a few meters. Using crutches reduces that effort and means she has more energy for activities, and that reduction in effort and saving of energy is even greater when using her wheelchair. Lizzie also made a great point about the response to different mobility aids. She mentioned that if she’s on her crutches she ALWAYS get asked “What have you done?”, “Did you fall over?” or “How long will you be on them?” even though they are bright pink and obviously not NHS standard issue crutches, but these are questions she’s rarely asked in her wheelchair. This is an obvious example of the way different disability aids are viewed by society, and I think it links back to what I said when I opened this post, about wheelchair users being seen as the ‘stereotypical’ disabled person. Wheelchairs are considered a marker of permanent disability whereas any other mobility aids are seen as temporary.

However, Lizzie also said something which reminded me how different our experiences of disability are. She said she’d rather not use crutches or be a wheelchair user, and I realised I don’t know how it must feel to think that way because, as someone who’s been physically disabled and had limited mobility since birth, I don’t know anything other than using mobility aids so it’s very difficult for me to think in terms of a life not using them.

Lizzie’s final point in her post is that she is happy to answer questions or educate people on disability, and I would say I have that same mentality too. However, be aware, if you’re an adult with an inappropriate question, I WILL tell you so, to your face, in public. I’ve spent too long answering questions which are either plain inappropriate or could easily be answered by Google, to run through the whole ‘smile sweetly and trot out my life story’ routine again. Sometimes, someone just needs to tell you you’re asking an inappropriate or personal question. As an extension to this, Lizzie pointed out that sometimes the answers to these questions are long or emotionally taxing, particularly as she OBVIOUSLY doesn’t feel comfortable telling random, nosy passers-by about her cancer treatment or complex genetics in the middle of the street! Overall, there is time and place for deeper questions, which isn’t just in the middle of a pavement, with a random stranger you will probably never meet again. The situation is different when it’s kids asking questions as they’re always welcome to ask and, perhaps more importantly, parents shouldn’t pull them away from disabled people like we’re contagious, because that leads to the kind of people who, as adults, ask inappropriate questions or have the same view of disabled people as the stranger from Lizzie’s original post who had decided she “couldn’t be disabled” because he’d watched her complete one task on one specific date.

Lizzie ended her post by asking 3 things of people: Don’t assume, don’t discriminate, be kind. I thought that summarised the point of the post quite elegantly, so I’m going to forego my usual sign off to leave you with those words too.

Don’t Assume.

Don’t Discriminate.

Be Kind.

Em (Invincible Woman On Wheels) & Lizzie (fellow wheelie and general queen)

An (EXTRA) 40 Year Wait For Step Free Rail Access?!

Recently I was LIVE on BBC Radio 4 (national radio here in the UK) discussing accessibility on trains and the impact a fully accessible rail system would have on me, specifically on my employment prospects. This interview was quite short but got me thinking about the issues I experience as a wheelchair user trying to access trains. With that in mind, I thought I would discuss those issues, and some of the ways things are SUPPOSED to be improving, in this blog post. I know those of you who’ve been following for a while will have seen me discuss these issues in blog posts about specific journeys before in the Travellingsection of the blog, but I thought it would be useful to have these issues compiled into one post.

Firstly, it’s probably best to put this (lack of) accessibility into context, which means STAT TIME! According to a report by Leonard Cheshire,  42% of train stations in England lack step free access. Obviously that’s close to half, which is a frankly ridiculous number. According to the same report, the Government is set to miss its target to make all stations step free by 2030, by 40 years and thus not have the programme complete until 2070. In 2070 I will be 74, which is absurd to think about, I’m only 24 now for pity’s sake! I REFUSE to wait until I am 74 to access the entire rail system in my home country. The worst thing is this is made to seem like it’s not an issue. 40 years is a pretty big deadline miss and there seems to have been very little outrage or coverage, other than from disabled people themselves and charities or groups like Leonard Cheshire.

So, what kind of impact does this inaccessibility have on me? Well, the Leonard Cheshire report focused on the impact on employment, so I guess I’ll focus there too. I’ve had to turn down jobs because I can only use public transport to commute to a job and the closest station to this particular location was inaccessible. Travelling by train to the nearest accessible station and then walking/ using the bus from there then  made the commute undoable. Besides the obvious impact of literally having to reject jobs, there’s also so much extra work and stress that goes into job hunting as a disabled person who needs to commute via rail. First, I have to work out which is the nearest station to that location, then I have to work out if I can actually use that station. THEN I have to ask myself I actually trust the accessibility information, because the accessibility information and the actual accessibility experience can sometimes not match up.

Beyond that, I have to account for the fact that, even where there is accessibility, it’s often only partial accessibility or via certain routes. For example, the station where I used to live in Chippenham is considered accessible, but the accessible entrance side is up a giant hill which, as you can imagine, could be an even bigger accessibility hurdle for those in manual wheelchairs who have to self-propel or be pushed, and those with a variety of other access needs. There is also a requirement (apparently it’s a suggestion but it’s certainly made to seem more like a requirement to me) to prebook travel assistance 24 hours in advance. That means I have no room for spontaneity, no room for late running meetings and all that stuff that’s pretty standard in a job and a life in general.

And inaccessibility doesn’t end once I’m in the station. Even once inside, I don’t have equal access. I have to wait in a particular office for someone to walk me to the platform and put the ramp out, which means I am not independent when accessing the train. I also have to be at the station 20 or 30 minutes before my train in order to be sure of assistance. It’s pretty bold to assume I don’t have things that ‘I’d rather be doing that just sat in a train station waiting room for 20 or 30 minutes for what should be a 5-minute task, are we assuming here that disabled people don’t have lives and other things to do? SOME train companies have trains now with ramps that extend out from the train, but that’s only on SOME train routes with  SOME companies. Independent access to trains shouldn’t be a lottery depending on where you live and which company runs your train lines. Then once I’m on the train there’s the stress of whether someone will be there to disembark me or if I will be abandoned on the train, yelling for assistance and hoping it doesn’t set off again with me still onboard.

There is also the issue of inaccessibility on trains themselves.  There was legislation passed which stated that all trains were to be  accessible by 1st January 2020, but at least 8 companies missed this deadline. Again, accessibility shouldn’t be a lottery depending on where you live and who runs your trains.

I also want to end by saying that, whilst the Leonard Cheshire report focused on the impact a fully accessible rail system could have on employment, It would have a wider impact too. This isn’t solely about employment, because disabled people (and people in general) are not just workers, we have social lives which would be greatly improved by a fully accessible rail system too.

Please support the effort for a fully accessible (or at least fully step free) UK rail system before that ridiculous 2070 predicted deadline.

Stay Invincible!

Em (Invincible Woman On Wheels)

Silver Linings of 2020

Guess who’s (finally, over a week in) back blogging for 2021?! Now, if you follow me on Instagram, you will have seen my New Year’s Eve post. In that caption I talked a little bit about the bright spots and silver linings for me in the mess that was 2020, so I thought I’d  discuss those silver linings in a blog post here too. Don’t get it twisted, this post isn’t me ignoring the fact that 2020 was hell with an extra sprinkle of awful for the majority of the world and the majority of the year.  This is just more of a personal post to hopefully change things up and stop me being in that mindset of “if things are terrible now, they will always be terrible”, reminding myself there is always light in the darkness. To quote Albus Dumbledore: “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light”. So I guess this is me turning on the light when it comes to my view of 2020.

Made It Into National News & Radio

Let’s start with (I think) the most exciting silver lining. I made it into the national news AND radio! Firstly, I was the lead quote and photo on a BBC Business News article where I discussed my struggles finding employment as a disabled person in the midst of the pandemic . Then I was LIVE on BBC Radio 4 speaking about the positive impact that a fully accessible rail system would have on me, and specifically on my ability to find  employment. As I said, these opportunities were really exciting and I feel like these are opportunities I wouldn’t have had the experiences or time to take if I had not made the move to Birmingham and been in lockdown with no reasons to say no to these opportunities. One thing I have taken from this is that I should just take such opportunities because what’s the harm in saying yes?

Moved Into My Own Place

As I eluded to above, I also moved into my own place that was not student accommodation. I actually wrote a blog post of this process detailing my experience of house hunting whilst disabled and the things I had to consider too. Admittedly, making the big step mid pandemic and leaving myself locked down mostly alone in a city I didn’t  really know was not my best idea. But living with my parents throughout lockdown 1 really solidified the fact that I needed my own space, plus I just started thinking “If I don’t make the move now then when will I?”. I would have just kept making excuses to stay where I was.

Now Live In A City I Adore

I now live in Birmingham, a city I love. It feels like home. I feel comfortable here. I didn’t even feel this comfortable in London, which  is weird considering I lived there for 4 years compared to having lived in Birmingham for “only” a year whilst completing my Masters (more on that in a minute). Obviously given the current situation, I have not seen anywhere near as much of the city as I would have liked since I made the big move. But I have plenty of Birmingham content for you to check out whilst we’re in lockdown, and I’m excited to get exploring again when it’s safer.

Masters Degree

Now about that degree. Yup, I now have a first-class MSc degree (aka Distinction) in Cognitive Neuroscience from Aston University.  I actually wrote a whole blog post on my experience as a disabled student completing this Masters degree. I’m not gonna sit here and say it was easy, because it wasn’t, even before the pandemic kicked off. Add to that universities closing, learning becoming remote and then having my exams changed (with my practical exams being dropped completely and all exams going online) PLUS completing my dissertation online with no in person access to my supervisor for feedback. With all of that going on, plus my personal situation with COVID as a high risk person with shielding family, completing my Masters was DIFFICULT. And I’m not saying that as a ‘woe is me’ moment or because I want your pity. I’m just acknowledging it for the difficult situation was and acknowledging the fact that I. DID. IT. and damn that needs celebrating.

Solidified Friendships

This whole situation has helped to form better friendships and become closer to certain people than I would have been without the lockdown and my move. Who am I kidding, this entire section is just a big shoutout to Lizzie, so all hail Queen Lizzie, saviour of my sanity. Lizzie and her two university flatmates were my support bubble when I first moved to Birmingham as someone who lived alone (so they were the only people I was allowed to see) and that really solidified our friendship. Obviously I adore her but I don’t know if we’d have spent this much time together or be as close as we are if wasn’t for my move and the restrictions. So thanks 2020 for one of the loveliest girls I’ve ever met and a new best friend.

Grew The Blog

This was most likely because the lockdown gave me more time to write posts, promote them and engage with the blogging community, but the blog grew more than I could have ever thought possible in 2020! It was viewed in 31 more countries and had 4,649 views from 2,041 visitors compared to 1,464 views from 871 visitors in 2019. I also hit new daily and monthly blog view hits. I also did more blog post contributions and started collaborating with other bloggers on blog posts for my own site, such as my collaborations with Alex at The VI Critic, Hope from The Hope Chronicles, and Artie Carden. These collaborations also lead to friendships beyond blogging, which have kept me going throughout restrictions, such as my friendship with Alex (whose blog you should definitely go check out over at The VI Critic !).

So there are my silver linings for 2020. Do you have any silver linings from the past year that you’d like to share? Perhaps my fellow bloggers have already written their own version of this blog post that they’d like to share?

Stay Invincible!

Em (Invincible Woman On Wheels)

Job Hunting as a Disabled Person

As a recent Masters graduate who’s not long moved into her own flat. The next thing on my “being an adult” list is getting a job. So I thought I’d give you a little insight into some of the things I have to consider most when job hunting as a disabled person.

What I Want or am Qualified to Do

I don’t think this part is much different to job hunting as an able-bodied person. As someone with a First-Class Bachelors degree and a Distinction at Masters level (allow me the single brag, I worked my butt off), the qualification part isn’t often a concern. However, I still need my PhD for some of the research roles I want. My problem is that I’d quite like to be a Support Worker in some capacity, at least through my PhD. And I regularly hold back from applying for roles where more personal or physical caring is required because I wonder how I’d be seen at an interview. I wonder if employers will see past my disability and see how I can provide support to another individual whilst also needing accommodations myself. I understand that it may be a health and safety thing, but I know I’d be capable of providing support as long as I was physically and safely able to in some way.

What I Physically Can Do

Ah yes, while we’re here. We best talk physical limitations. Obviously I couldn’t do anything too strenuous or physical (involving lifting or the suchlike), but not because I couldn’t physically do it. More just because it would take me longer and wouldn’t fit into company ideals of getting as much done as possible. I also can’t do anything involving specific hand eye coordination because mine is SHOCKING.

So I’m most likely to be in some form of office role just because of the lack of strenuous physical demands. However, even there I’d need adaptation: An accessible location (i.e. city) to work in, an accessible building to work in, possibly an electronic desk, possibly certain kinds of accessibility software such as speech to text (depending on the role). These are the kind of adaptations I won’t mention until at least interview (unless I know from the job description they’ll be necessary).  This is just so I can fully understand the kind of adaptations I’ll need, to make me as good as possible at the role, before I ask for them.

Whilst we’re discussing what I can’t do in a role, how about we reverse it and think about what I as a disabled person can bring to a role? Adaptability: Lord knows we’re used to adapting to different situations as disabled people facing inaccessibility, and that adaptability comes in handy in an everchanging world. Perseverance: Again, I’m constantly used to working through or around issues as a disabled person, and that resilience and stubbornness to give up on a task will hopefully give me an extra edge when it comes to facing setbacks or difficult tasks in the workplace. But I think the most important thing I can bring is perspective, particularly when it comes to products. Most products are marketed at an able-bodied audience and so the disabled customer doesn’t often come into the conversation. I believe that would change if there was a disabled employee at the table to discuss these kinds of things.

Travel

The other aspect that keeps coming up in my job hunt is travel. Thinking about the length of a commute, and how that’s likely to be longer than the same commute for an able-bodied person. Wondering if a commute is even possible and if the train station near my prospective workplace is  accessible, alongside wondering if the workplace is accessible. THEN there’s the fact that some roles require a full drivers licence (which I am not LEGALLY ALLOWED to possess) without stating why it’s necessary to have a drivers licence. The number of times I’ve found a role I want with a feasible commute, to discover I’m essentially not allowed to commute because the role requires a full drivers licence without an obvious reason why, is INFURIATING.

Interview

One unexpected plus I’ve found is regarding being put forward to the interview stage for a role. On some applications I have seen the option to state that you are a disabled applicant. You then explain a little bit about your disability and adaptations you may need at the interview stage. The application then says that those who meet the main necessary criteria for the role and have identified themselves as disabled will be progressed to an automatic interview under what I believe is called a “Two Ticks” system. I’m not sure how widespread the scheme is as I’ve only seen it on Research Assistant applications at universities I’ve applied to, but I’m certainly intrigued to learn a little more about how the scheme works.

Update: I’ve now learned some more about the Two Ticks scheme. Firstly it’s now called Disability Confident and has 3 tiers. The first two tiers (Committed and Employer) are self assessed as Disability Confident whereas the top tier in the scheme (Leader) has to be assessed as Disability Confident by an external body.

Final Thoughts

I hope you’ve enjoyed my initial thoughts on job hunting as a disabled person. I hope it shows a need for open mindedness when looking at job applications or designing job descriptions. You may be losing out on the perfect candidate because they’re disabled and you’ve made the role seem inaccessible to them, when in reality it could be accessible with some thought and adaptation. I hope it also shows that disabled people want to do non office-based roles and those roles should be accessible where possible.

No doubt I’ll update this as I continue the job-hunting process.

Stay Invincible!

Em (Invincible Woman On Wheels)

House Hunting as a Disabled Person

Back in July, I finally made the big move. Moving out out (not just into student accommodation)into my own flat in Birmingham! As a wheelchair user, there were a fair few considerations I had to make when deciding where to live. So I thought I’d discuss a few of those considerations.

Social Housing vs Private Rent

The first thing for me to consider was whether wanted to live in council/housing association housing or if I wanted to privately rent (of course buying is also technically an option but it wasn’t financially an option for me. This consideration felt like balancing the fact that council housing could be the more accessible option, with a lift, ramp or wet room more likely, against the “stigma” that I perceived around council housing, as some kind of government handout and feeding into the “scrounger” narrative around disabled people. For me, I didn’t want to be seen as disabled or in receipt of “special” housing, so I chose to privately rent. An odd thing to do, making a decision to avoid feeding into a narrative that I KNOW is false anyway, but that’s just how much these stigmas and narratives can affect disabled people. Anywayyyyyyyyyyyyyyyyyy I’m getting side-tracked.

Location

Next up was location. Obviously most people choose to live somewhere because of school, work or family. Similarly, I chose to live in Birmingham because that’s where I was, pre pandemic, completing my Masters degree and is where I hope to continue onto a PhD. Then it came to choosing where in Birmingham to live. I chose the centre since I was aware that I’d need to be in the centre for university and most things anyway and that public transport from the outer boroughs of Birmingham could potentially be inaccessible. Of course I had to consider the effect that had in possibly increasing the price.

Price

As I was saying, the price. I knew that, for a section of time at least, I’d be surviving purely off my disability benefits (Personal Independence Payment) which those in the disability community in the UK will know, REALLY isn’t much. I was lucky in that I had savings I could use and could pay some rent in advance to give me some time to get on my feet with a job. However, the limited income I have as a disabled person certainly impacted what I could afford.

House Type

Then there was choosing what kind of building I wanted to live in, whether that was a house, flat or bungalow. I decided to go with either a flat or a bungalow as both of those would be on one level which made more sense for me as a wheelchair user, rather than having to navigate stairs in a house.

 Access Needs

And of course there were my specific access needs to think about within the flat or flat building. I ideally wanted a ground floor flat as that would be easier than having to rely on a lift which could have broken down at any point. The biggest area of contention was the bathroom as that is where I need the most adaptations. There’s always debate about a bathroom with a bath or one with a shower, and IDEALLY I would have liked a bathroom with a roll in shower or wet room, but they’re practically unheard of in private renting, so I ended up with a shower over the bath. And this is where the idea of compromise as a disabled person comes in, what do we class as an acceptable level of accessibility? What is the sort of situation we can “make work” with accessibility aids? In my case I made the shower over the bath situation work with a suction grab rail and a new shower seat (set up seen in the picture below).

A black and white image of a bath which contains a bath seat with 4 horizon slats. There is a grab rail positioned on the wall directly behind the seat. It is positioned on the wall on a diagonal slant. The bath tap is in view on the far bottom left of the photo

Door Dimensions

Aaaaaaaaaah door dimensions, the biggest bane of this entire process. As a wheelchair user I need to know door dimensions so I know whether or not my chair can fit in, because obviously if not the flat is a no go. It was ridiculous how many times I asked for these dimensions to get the response of “standard door dimensions” and then be told someone would take measurements and get back to me when I asked for specific numbers. This kind of information should be gathered as standard when listing a property and then made available on the website or any listing AS STANDARD.

Extended Process

House hunting as a disabled person is also an extended process compared to how I assume it would be for an able-bodied person. I can’t just see a property I like and make a bid. I have to see something, make enquiries and then wait. I have to wait on non-negotiable aspects like door dimensions, things I shouldn’t HAVE to wait on. And the likelihood is, by the time I have the information I need, an able-bodied person has submitted a bid for the flat I want and had it accepted.

Pandemic

Oh and THEN you add into the mix that I made the smart choice of deciding to make this big life move IN THE MIDDLE OF A PANDEMIC. That meant that in person viewings were not an option, something that is kind of key as a wheelchair user to make sure my chair ACTUALLY fits in the place I just paid for. This meant that even though I  had the door dimensions I  didn’t know if my wheelchair fitted into my  new flat until I’d officially moved in, which was anxiety inducing with a capital A and a capital. Add to that the fact that, as someone with cerebral palsy, I’m considered high risk for COVID 19 and as such had been limiting my social contact. Limiting social contact is obviously difficult to do when you’re moving and need to go into an office to sign papers. Overall the pandemic added another layer of difficult to an already complicated situation.

The Perfect Accessible House and House Hunt

With all this talk of the many considerations when house hunting as a disabled person you’re probably saying: So tell us what the perfect accessible house and house hunt would be then! Well the perfect accessible house depends on the individual but for me it’s: A flat (which I have) on the ground floor (which it is) in the centre of a big city (which it is) with a wet room bathroom (which it does not have)

As for making the house hunt accessible, that’s pretty simple from my experience: PUT. ACCESSIBILITY. INFORMATION. ON. THE. LISTINGS. SO I CAN ACCESS ALL THE INFORMATION I NEED TO MAKE A DECISION ABOUT A PROPERTY LIKE EVERY. BODY. ELSE. oh was I yelling there? oops sorry about that.

And after all those considerations, I finally have my own flat in Birmingham to call mine all mine! I hope you enjoyed this insight into house hunting as a disabled wheelchair user in a pandemic.

Stay Invincible!

Em (Invincible Woman On Wheels)

Why I’m Proud to be Disabled

In a (very belated) nod to Disability Pride Month, which was back in July, I thought I’d do a little piece on why I’m proud to be disabled!

Community

I think the biggest reason I’m proud to be disabled is the disabled community. We’re strong. loud and proud about being disabled, fighting for each other and for change. In finding the disabled community, in real life and in the online world through social media and blogging, I feel like I’ve found my people. The ones I can rant to about ableism or inaccessibility without feeling like I’m complaining or ungrateful (the way I’m sometimes made to seem by the rest of society). When I look at some of the work that’s happening within the disabled community to fight ableism and inaccessibility, it gives me hope for a more accessible and equal future for disabled people.

What It’s Taught Me About Me

Being disabled has also taught me a lot about myself, I’d be lying if I said it hadn’t shaped me as a person. Being disabled given me perseverance to work at overcoming barriers (the literal and structural ones which are VERY obvious when you’re disabled) and the single-minded focus to not let the way society is set up get in the way of me achieving what I want to achieve. I also believe that being disabled is the basis for pretty much all of my problem-solving skills, I’m constantly having to find ways around problems (read: inaccessibility) as a disabled person, and particularly as a disabled person. Being disabled has also given me a wider view of disability. I mean that both in terms of seeing more accessibility adaptations in the world, and more variety in adaptations, than I probably would if I wasn’t disabled. But I also mean it in terms of seeing disability positively for the strength it can be and adaptability it can bring, as opposed to seeing it as the pity party or horrible, pitiful existence that it can be viewed as by the rest of society sometimes.

What’s It’s Taught Me About People

I’ve also learned a lot about people and society in general. Particularly since being active in “advocacy” and the disabled community, you realise that some of the things people say are entirely ridiculous, some of the sentences and questions that come out of peoples’ mouths on a daily basis when they see me in my chair and my only response  has to be “excuse me?!”. It also makes you realise that a lot of the misconceptions and biases about disabled people go deeper than you’d think, a lot of the actions or words seen as “helpful” or “compliments” really aren’t and people say or do a lot of stuff without realising how unhelpful and potentially hurtful they can be. I hate to be a Debbie downer here but being disabled really can show you the darker, more upsetting side of society and the way people think.

Opportunities

Nowwwwwww back to the positives. Being disabled has given me so many opportunities that I don’t think I wouldn’t have otherwise had. I highly doubt I would have started this blog if I didn’t have my life as a disabled person as the topic to focus on. And this blog has of course led onto other opportunities including being featured in national media. The opportunity to have legs that are fully functional and allow me to walk unaided? That ship sailed long ago, but so many opportunities have come along BECAUSE that whole “walking unaided” thing didn’t happen.

Who I Am

Mostly I’m proud to be disabled because it’s who I am, and I can’t help but be proud of my own existence. I’ve been disabled since birth; I know no other life than the one I’m currently living. I think that confuses people a fair bit too, when they ask, “if you could take a pill that would make you able bodied would you?” No? I don’t know how to live that life, I know how to live this disabled life, and I feel like I’m quite good at it, so I’ll stick to this life thanks

Bonuses

Then there are of course the little bonuses. Things like queue jumping and barely having to wait in a queue ever. Or getting to ride around on a fancy set of wheels that everyone always says they want. Or having my own personal dancefloor when I’m the only one on the wheelchair accessible platform at gigs. Or the free carer tickets for gigs which essentially mean I get a  half price ticket in comparison to everyone else (we LOVE a bargain over here at InvincibleWomanOnWheels).

So, those are the reasons I am proud to be disabled. I hope my fellow disabled people had a great July (as much as can be expected in the current situation) as Disability Pride Month and continue to have a great rest of the year!

Stay Invincible!

Em (Invincible Woman On Wheels)

How To Be Empowered Whilst Disabled: Our Stories of Hope and Invincibility (A Collaboration Between InvincibleWomanOnWheels and The Hope Chronicles)

I’m delighted to have the lovely Hope of The Hope Chronicles collaborating with me on this blog. We both thought we’d give you a little insight into us and our blogs, so there’s a little Frequently Asked Questions section for both of us and a little more of what we want to achieve with our blogs. Enjoy!

Emma (InvincibleWomanOnWheels)

Name: Emma, Em, Ems, The Invincible Woman On Wheels

Age: 23

Condition: Cerebral Palsy Spastic Diplegia

Location: Chippenham/Birmingham – based in Birmingham for University

What’s the reason/message behind the blog?

To give a realistic view of life with a disability. Disability isn’t all pity and sadness, but let’s be real, it’s not all sunshine and rainbows either.

 What is the story behind the blog name and social media handles?

The idea essentially began on the Sicily trip which is the first post on here. My travelling companions and I managed to work around and overcome many challenges that we faced on this trip (both accessibility-based and otherwise). This led to us calling ourselves the Invincible Women throughout the trip and beyond. Whilst on that trip those friends encouraged me to start this blog. When thinking of a blog name, it only felt right to take inspiration from the trio on that trip as a sort of homage to where it all started. That is Invincible Woman On Wheels as you know it.

Any advice for other disabled bloggers?

I think my biggest slice of advice would be to write about what you know from the viewpoint of your condition. By that I mean write about your experiences and don’t try and write about a topic if you don’t think you have the right knowledge, if you think you should be writing about it, or if it’s the “trendy” topic. I’d rather see “I don’t know about X” in a blog post than someone who’s trying to pool research without any first-hand experience. My other advice is to be honest, particularly if you’re writing access reviews like I do. Venues may not like it too much if a review paints them in a negative light, but if you’re trying to give good access information to fellow disabled people, an honest, accurate review is better than a sweet one.

What’s the oddest thing you’ve ever been asked?
Someone I’d barely spoken to once asked me “So how do you have sex?” and I JUST DON’T ASK THAT. There are 3 questions/comments here: a. Would you ask an able-bodied person that?!; b. Why does that question even enter your head as the first one to ask me?!; and c. That’s literally not anyone’s business unless we’re dating.

What does your disability mean for your life and what is the hardest part of it?

The biggest impact of my disability is that I cannot walk and am a wheelchair user. Some of the probably less obvious issues are things like fine motor control issues which can making using scissors and other actions that need small precise motions more difficult. I think the hardest part about my disability isn’t actually the condition, but more realising that society isn’t made to accommodate me or consider the fact I exist at all. I mean that both in terms of physical inaccessibility and in terms of social protocol Every system is more difficult to navigate when you’re disabled.

What does a typical day look like for you?

This depends a fair bit on whether I’m at university or at home, so I’ll keep it vaguer instead of being too specific to either setting. I’ll start with breakfast and my all-important coffee around 8am. Then, during the daytime, I’ll deal with what I refer to as “life stuff,” i.e. the stuff to do with being an adult and not related to my blogging side hustle. As a rule, that meant preparing for and attending the lectures and seminars for my master’s  degree and planning or completing assignments. However, more recently during the pandemic, (in lockdown and with no university lectures) it’s meant working on my application for a PhD, job hunting, and house hunting. Once I’ve done some of that stuff, I’ll have some dinner before moving onto blogging tasks (i.e. planning, writing, and promoting blog posts). My evenings, if I allow myself a proper evening, consist of watching MMA (Mixed Martial Arts) or a TV series if there is an interesting one shown that evening.

What interests you when you aren’t managing your disability?

I’m the biggest lover of music and specifically live concerts. I also love watching MMA, either on the TV or live in person. I even have a section on my blog about travelling to MMA shows and another on my favourite MMA promotion Cage Warriors.

Do you have any desire to write beyond the blog? If so, what, where or how? 

I’d like to do a little more activism through my writing and be part of wider society, developing more understanding of what true life with a disability is as opposed to the depictions we see on TV and in films. I think the best way to do that kind of work is writing experiential pieces about various aspects of life with a disability for  magazines and/or news outlets, maybe like the interview I did with The Guardian on what it’s like to attend university as a disabled student. With that being said, I do have a contact page if any magazines or news outlets do want to get in contact about articles or interviews from me on various aspects of life with a disability.

Now over to Hope to tell you a little bit about herself!

Hope (The Hope Chronicles)

Name: Hope, Hope Osborn, Y. Hope Osborn

Age: 43

Condition:  Combo–Severe, Recurrent, Major Depressive Disorder, Complex-PTSD, general anxiety, Osteoporosis that has caused me to break or fracture bones for 6 years in a row now, with my 5th surgery  June of this year, Endometriosis, Hypothyroidism, Fibromyalgia, Mild Carpal Tunnel, herniated disc C6C7

Location: Little Rock, Arkansas, USA

What’s the reason/message behind the blog?

To raise awareness of child abuse, trauma, mental illness, social justice. Also, though I am aware of these things, I hope to remind people that there is beauty, victory, and freedom amid hardship, such as in my photography art.

What is the story behind the blog name and social media handles?

I started the blog back in 2012 before I had to stop working a regular job, before now earning my MA in Professional and Technical Writing in December, before building a photography and writing freelance business was in mind, and before I was as open as I am now about my trauma, so it started out on a variety of different topics than I now cover. It still stands that The Hope Chronicles is predominantly about just living life in general and the various encounters of my life that I want people to find hope in.

My social media handle of YHopeOsborn is about creating space in the world for my writing and photography and building a freelance business in those realms in order to be productive while working around health appointments, surgeries, treatments, etc.

https://twitter.com/YHopeOsborn

https://www.facebook.com/YHopeOsbornMedia

http://LinkedIn.com/in/yhopeosborn

https://medium.com/@YHopeOsborn

https://www.artworkarchive.com/profile/yhopeosborn

https://www.saatchiart.com/yhopeosborn

Any advice for other disabled bloggers?

I have to agree with The Invincible Woman on Wheels or Em in writing about what you know and reviewing for generative feedback, meaning that which enables the writer to be a better writer.

As she said, just because you have a disability, it doesn’t mean it has to enter into the picture of your blog. One thing I try to do in my life is give myself avenues for getting away from my disability as much as possible, such as my photography art, gardening, and pets, Isobel, the kitten, and pair a parakeets, Widget and Whimsy. I just  work at making each easier in some way so that I don’t feel confined by disability. I enjoy the bounty of color and creation my garden provides year around, the purr and cuddle of my kitten, the happy chirping and talking with my parakeets, and finding great photo Captures.

Also, don’t ever be ashamed of being disabled. I must remind myself of this, particularly during the frequent times in surgery and in boots and crutches or walker (even wheelchair for 6 weeks a couple years back). I don’t appear to others as if I am disabled enough to not work a regular job. I feel like I need to explain myself, and I don’t. You don’t, whatever your situation in life. It is your own experience. You know the truth of it for yourself.

What’s the oddest thing you’ve ever been asked?

When I was at my last job and I started sleeping in the morning without waking to multiple alarms and calls by friends and anything else I could think of, I was sincerely apologetic and ashamed of being late for work, though I always made up the time some way. In those few months of that I worked with doctors, including a sleep study, trying to figure out what was going on.

As I was trying to explain to my employers all this with regular updates, they totally ignored any reference to it being a health problem, and one of the times I was late, I was called into the office manager’s office where she proceeded to say, “You know if you would just call and tell us you were going to be late, we’d understand.” Maybe not the oddest. Maybe unanswerable as a stupid statement, but I still responded, “If I could call you to tell you I’d be late, I would be awake and wouldn’t have to call to tell you I was going to be late, because I’d be here.” I was fired for those ongoing offenses caused by my health and a month later the problem cleared up without explanation or any more treatment than I already received.

However, I think it was God’s way of getting me out of what turned out to be a bad work environment and out of general work, because I would have been too afraid to let go of even a crappy job to spend my time focusing more on my degree, writing, photography, and health.

Which of your conditions do you consider the most impactful on your day?

The most obvious that comes to mind is the yearly broken bones with surgeries along with surgeries outside of the osteoporosis, but the answer is much more subtle even to me. The Depression and Complex-PTSD or just the traumatic childhood explains not only my constant stress and self- and relationship- destructive behavioral actions and mental thinking, but, according to studies, child abuse survivors suffer more physical ailments. A lot of my health problems are genetic, but I don’t see these in the family, or they are just odd for my age or situation, such as the osteoporosis without cause, and probably are a result of childhood trauma, and adult trauma for that matter. If you count all that together that covers most of my problems and I would say the Complex-PTSD is the condition. I battle the flashbacks, dreams, disassociation of it and trying to tame it through counselling, treatments, and psychiatric drugs, alongside all my health-related meds every day.

The fact is that all through my developmental stages of life I was traumatized in multiple ways, so bad neural pathways were laid down and good ones were short-circuited. I’ll be years in therapy working on cleaning up that mess, particularly since I have only in the last few years had a really good counsellor and psychiatrist.

What does a typical day look like for you?

A typical day is that it isn’t ever typical. My alarm is set to wake me at 5:30, so I can get up long enough to care for my cat and take my morning pills. Then, if all goes well, I lie back down and sleep for another hour or hour and a half, waking naturally and not feeling the yuck of what sits with me from night. I spend an hour or so “catching up on the phone,” I call it, because I am on my phone, responding to or sending emails or texts, working on social media, seeing how much REM or deep sleep I managed that night to explain whatever state I am in and watching for problems that tell me how well the ketamine treatments for my depression are going and to explain whatever state I wake in, updating all the apps that need attention, and calling doctors’ offices when necessary.

Then if I am not crippled with a fracture like now or down with and quarantined in flu-like illness (such as twice in a row during the pandemic) or something else doesn’t absolutely preclude it, I try to either spend 30 minutes doing a part of cleaning the place, exercising at the gym, or tending my year around patio garden. In and out of all this time I try to keep up a schedule well in advance of my current day because it helps motivate me to do the next thing, particularly on difficult health days.

If there is anything that is work intensive, like photo shoots (not often), writing, studying (such as for my MA, watching or doing workshops, or taking a library course), figuring out business or other writing or art possibilities,  working on finances, or Wednesday’s order of Kroger click list, for example, it has to be done in the morning or early afternoon during my peak energy and focus time.

The first half of my afternoon, I try to plan socializing, often with food, drink, or house prep and any kind of appointment or treatment, run errands, do chores. If I have a heavy day, I take about a 45-minute lunch break to heat up something quick from my once a week cooking or from the store and debrief by watching good clean comedians, because laughing is part of the ton of medications taken with lunch. Sundays also at that time I divide out all my pills to take 5:30am, noon, 5pm, 8pm, and 9:30 and set aside pill bottles I need to get refills by the end of the week for the following week.

By noon even now at a slower paced morning, I am already getting very tired. I need to lie down and not push myself because when I inevitably do, I create pain and sickness and exhaustion that affects the already difficult time of going to sleep by 10 even without going anywhere or communicating by any means after 6 though that is often when other people do things. I miss gatherings and special events all the time because I can’t push it or mess up my whole going to sleep process, which then dominoes into diminishing productivity or well-being the next day.

So by 2pm or 3pm, I recline on the sofa and work on photo processing; which I found I can do in my off time, though it is tiring and too easily captivating; and/or spending time with my cat and talking some more with my social parakeets. I also spend time arranging things or catching up via text or email or working on schedule-based events and communications of the day.

5pm I shut all the blinds and curtains, turn off most of the lights, take a shower, get in my pyjamas, unless I needed to in the morning, take medicine, care for the cat, and spend the rest of the evening until about 10pm bedtime. I sleep on the sofa using a quilt I made when I was a teenager to cocoon in because, since the bedroom was a problem with my father growing up, my bedroom is where I struggle most to sleep, have my “grey dreams,” have PTSD experiences and feelings, which in turn allows my head to go all sorts of negative ways just perpetuating the insomnia. Because I am so hard to sedate and because of medications I wake up at least once around midnight, needing a carb snack to fall back asleep. I hate that and other awakenings because it makes me feel yucky then and sometimes into the next day when ability is determined according to whim and how the previous day or that night went. Sometimes I must make myself take a sick day if I have had a really bad night or previous day.

There are always the limitations and intrusive problems and endless medical appointments, treatments, and surgeries and a good but hard counselling session once a week. I disassociate a lot. A lot of my disassociations I didn’t realize until thinking through issues or events with my therapist. Any getting up and down from the ground is painful enough to make it difficult to get up at all with right now yet another stress fracture in my left leg because I have osteoporosis for no medical reason that has caused me to have broken bones and surgeries for the 6th year running. Then every day there is pushing against the crowding health issues, trying to ignore them to have a life apart from health.

What interests you when you aren’t managing your disability?

I do enjoy listening to my playlists, Cur. Favs, Easy Groovin’, Jammin’ and Exercise Jam in the mornings to help push me along. The Cur Favs are anytime, and Easy Groovin’ is for company or afternoons. I love my year around garden, with the spring and fall planting allowing me my Disneyland experience of going to the garden center to partly fill an order I planned and partly figure out the palette from what is available that year. I used to read the last two hours of every day (I mean I read at least that much every day since I was a kid), but now not so much because for some reason I got bored of it, I think at least in part because I read through all the good mystery genre at least once. After all these years, I just lost interest, which is bad for me as a writer for by reading we grow our vocabulary, perspective, concepts, etc. I need to read the long list of nonfiction I gathered from my professors.

Additionally, I am a photographer artist. At least once a month except when I am laid up with surgery as just now, I go out on photo shoots looking for great Captures. I may go downtown and photograph historic buildings from all sorts of perspectives or go to a park with a view and photograph the landscape or take photographs from the flowers in my own garden. I process them like a painter adding depth to bring out a cornice or color to bring forward a whole building or a bump to add dimension to a flat floral photograph. I win awards in competitions and have shown in galleries here in Little Rock, Arkansas, in Portland, OR; and online at Fusion Art in an artist solo spotlight.

I work on getting my photographs and written works published with some small success so far. You can find my work here at artworkarchive.com/profile/yhopeosborn and can contact me directly yhosborn@gmail.com for any prints or canvases you may want. I have just set up sales on Saatchi Art.

Do you have any desire to write beyond the blog? If so what, where, or how?

I have considered writing my memoir, but I only have some stories and a partial manuscript. I write creative nonfiction and for school write rhetorical analyses among other things, such as writing code for websites in an upcoming class that is one of two classes that will finish out my MA in Professional and Technical Writing with a Creative Nonfiction emphasis, preparing me for grant writing, legal writing, whitepapers, research, and a variety of other areas and software to work alongside my photography as a freelance writer, editor, artist, and designer.

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I hope you learned a little about us both

Stay Invincible! And live a life of Hope!

Em (Invincible Woman On Wheels)

Hope (The Hope Chronicles)