Blog Post 100: The Story of The Invincible Woman On Wheels (Part One)

Image Description: A selection of photos and text on a white background. The image on the left hand side is of a baby in an incubator with a multicoloured caterpillar in front, underneath the image are the words "From This" written in blue. The image on the right is Emma, a white woman with brown hair and glasses, smiling into the camera. Underneath this image are the words "To This" written in blue. There are also 3 sections of blue text written underneath each other in the centre of the image. The top centre text reads "How I Became the InvincibleWomanOnWheels". The middle centre text reads "Part One" and the bottom centre text reads "My Personal Story"

So here we are. A point I never thought I (and probably some others never thought I’d reach. blog post 100 on Invincible Woman On Wheels! ONE. HUNDRED. To celebrate this milestone, I thought I’d give you a little look into the past. A look into the story of The Invincible Woman On Wheels. No, not the blog story. MY story. How did I get to this point? Well here’s the inside scoop on that (with plenty of points filled in by my mum since I obviously remember very little). Also, just a warning, this post will contain a lot of medical talk, discussion of child loss, and general potentially upsetting discussion. So if anything like that is going to upset you, please feel free to skip this post. soooooooooooo with that, let’s start from the beginning. Please note this is part one of  (at least) two, because A LOT has happened in my near quarter century on the planet.

Birth & Medical Stuff

There’s a little something that no one in the blogosphere actually knows about me. I am actually a twin. Unfortunately, at 30 weeks pregnant, my mum went for a routine scan and, during the course of  the scan,  my sisters’ heart stopped beating.

When this happened, the medical team brought my mum straight in so they could  watch over me and give my mum medication to stimulate my lungs and help them develop for 24 hours (since they knew I would HAVE to be delivered earlier and therefore my lungs were going to be underdeveloped) before I was delivered. However, since I work to no one else’s schedule but my own, I decided I wasn’t going to wait the full 24 hours and instead sent my heart rate on a funny little turn which meant the medical team decided to do an emergency Caesarean. And thus I was born and you were all blessed with an unscheduled extra 10 weeks of my existence (I know, lucky you!).

I was then whisked off to the special care unit (or NICU)  and my mum didn’t see me in person until about 5 hours later, although she did get a Polaroid picture of me in the meantime. I was on a CPAP ventilator whilst in the NICU. This is a machine that made sure my lungs were fully inflated whilst I made some of the effort to breathe. According to mum I “did really well” APART FROM a bleed on the brain (SPOILER: remember this bleed on the brain thing, very key part of the upcoming disability diagnosis) However, the scans showed that my ventricles weren’t swollen and the bleed settled down without need a shunt installing. Then, at about Christmas time (I was born just before Halloween) I was moved into the ‘second nursery’ and put in a standard cot as was no longer needing to be ventilated and was regulating my own temperature. So worries over, out of the woods right? Nope.

After a little while of calm,  I contracted the RSV bug and was nearly put on a ventilator again. I got through that and, after spending the first 4 months of my life in the hospital, I came home. Soooooo medical drama over and on with normal baby stuff right?

Oh no dear reader I had one  more trick up my sleeve. During a feed one morning whilst I was home, I started being sick. In the process of being sat up from the feed and then laid back down, I decided to swallow milk into my lungs and stop breathing. Thankfully, due to the myriad of hospital programmes my mum watched (and frankly still watches) she managed to give me rescue breathes and get me breathing again whilst my dad was calling an ambulance. However, I did end up  back in the hospital for about a month as I had shadows on both of my lungs and one of them had collapsed to about half the size, this is something that sometimes happens to premature babies like I was.

So that’s a premature birth, ventilation,  a brain bleed, an RSV bug AND a partially collapsed lung, all within the first year of existing. AND WE HAVEN’T GOTTEN TO THE DIAGNOSIS PART YET. What can I say? I’ve been a drama queen from the beginning.

Cerebral Palsy Diagnosis

Remember that whole brain bleed thing I told you to remember? Well here’s where it potentially comes into play. My mum says that I started sitting and crawling commando style a little later than is typical but it was but still deemed okay development and not something to be concerned about. My development was always quite closely monitored because I was a premature baby, with regular appointments in the paediatrics department. At somewhere around 18 months to 2 years old, I started somewhat regressing and losing the ability to sit up and other things. Some of the medical staff that I saw  just said that I was a little behind and would catch up.

My mum then met Dr Chris Day. He was one of the doctors who had been part of the hospital unit I was in as a baby and also became a really good friend to the family.  He was  also the one who initially explained to my mum about that bleed on the brain that I had as a baby. This man REALLY knew his stuff, to the point where he didn’t even need to open my file to see my medical history and was instead able to reel it all off to a trainee doctor from memory.

My mum explained to him that she felt something wasn’t quite right with regards to my development, now not being able to sit up and such. He suggested physiotherapy and referred us there. With that I began having physiotherapy sessions and, after a couple of months of sessions. I was diagnosed with Cerebral Palsy (specifically the Spastic Diplegia version).

Disabled people will know that the diagnosis process I just described is probably the simplified version, but I think it shows what can happen when you encounter a doctor like Dr Day who really listens and knows their patients. And I do somewhat wonder what would happen if I had not encountered those medical staff who said I’d just ‘catch up’, whether I would have been diagnosed any earlier and whether it would have made any sort of difference. I guess we’ll never know.

So there it was, we had my diagnosis. What’s happened since then? Well a fair bit considering that was only my first year or so of life. Stay tuned for Part Two (and potentially more) on the story of this Invincible Woman On Wheels.

Stay Invincible!

Em (Invincible Woman On Wheels)

Voting As A Disabled Person: Wheelchair User Edition

Recently, I voted in the election of the West Midlands Mayor and Police and Crime Commissioner, and this reminded me exactly what it’s like voting as a disabled person, so I thought I would discuss the experience. I will be discussing this most recent experience and one other.

It all starts with registering and preparing to vote. This is something I have to do every time I move to a new location. As a student for the past half decade, I have moved a lot so you can understand that’s a lot of registering to vote. Then, maybe a couple of weeks before the election, I am sent my polling card which includes my polling location where I need to go to vote. It literally says ON THIS CARD, that those with access needs should call to check  the accessibility of their polling station. This begs the questions, why not just make all polling stations accessible? Like, as far as I understand it someone selects the polling stations, so why not just pick accessible locations, surely that would be easier than fielding 100s of calls from disabled voters? On this occasion, I called 2 days before the election and provided all my information, to be told that my polling station was accessible.

Then comes the mission of actually getting TO your polling station as a disabled person. The accessible route somewhere is not always the same as someone else’s route. On this occasion, maps informed me that my polling station was a 5 minute walk down one straight road. However, roadworks with poor disabled access, specifically pavements with a distinct lack of drop kerbs, meant a 5 minute trip was more like 20 minutes. The polling station was also poorly signposted, so poorly signposted that I actually missed it on my first time walking past because the signs were so small, and I am just ridiculously unobservant so I cannot imagine how it is for someone who is visually impaired. I was also randomly accosted by a woman , but I will be discussing THAT incident (and others) in an upcoming post regarding experiencing harassment as a disabled person.

Then I FINALLY got to the point of requiring access to the actual polling station. Whenever a venue of any kind simply tells me they are “accessible” without any details I always wonder what they mean by that. This time, I approached the polling station and instantly saw stairs with no ramp in sight and sighed, assuming I had been misinformed regarding accessibility. But then I spotted an alternative access sign and a stair lift that looked about 400 years old. I got in and pressed the up button but it didn’t move. Luckily, I was able to ask a fellow voter to inform the staff inside that I needed to get in and just assumed the staff would have to turn the lift on. Then someone comes out and their sentence begins with “unfortunately…”. It was at that point I  knew already that the lift did not work. It turned out the  lack of use over lockdown had led to the battery burning out, it is so BIZARRE what happens when you don’t use a piece of equipment for an extended period of time (heavy sarcasm, I could have told you from the start that would happen). I then asked for the ballot papers and boxes to be brought outside, which they were, this meant I was still able to vote, albeit with absolutely ZERO privacy or independence.

2022 Update: I called ahead to the council helpline to check that the polling station was CURRENTLY accessible given the the situation last year (see above), specifically asking if it was accessible for the upcoming elections. The call handler found my polling station, went away and came back to say it was accessible. For clarification, I asked if it was CURRENTLY accessible, and explained what had happened last year. I was then told “well you didn’t ask that?!” and “do you want to know if it’s currently accessible then?” I thought it was clear enough that that was my intention when I asked if the polling station was accessible for the UPCOMING elections. but apparently not. The call handler then suggested contacting the polling station directly (something I thought she would do, given that this was a helpline meant to give out information about polling station accessibility) but she just started reeling the phone number off from Google (where I could have found it myself).

Can someone explain to me, what is the point of a helpline for information on polling station accessibility, if their response to a request for CURRENT, ACCURATE access information is “here’s the phone number from Google, ask them yourselves”? Although disabled people are often expected to do all the work when it comes to finding accessibility information, so I can’t say that this response was remotely surprising. Oh, and to top it off, when I called the polling station no one picked up!

Long story short, guess who’s given up chasing people for BASIC information and decided she’s just turning up on the day and demanding she be able to access an in person vote? *raises hand*. Catch me being an absolute menace, and likely annoying someone at least once, on May 5th.

2022 update v2: Arrived at the polling station discover *gasps in fake shock*… the lift was out of action! After asking someone who was entering the polling station to alert staff to my presence, a staff member came out to verify what the issue and take my polling card. Then they came out with a polling card which I had to fill out, fold up and hand back to be taken back inside to be placed into the ballot box by the staff member.

Needless to say, I rang the council once I got home. I informed them they’d need to remove my polling station from whatever “accessible polling stations” list they have, since it obviously WASN’T and ISN’T. That complaint has been logged so now we’ll see what they do. Bets for their response being to do a whole lot of sod all?

It also bears saying that even when polling stations are “accessible”, that access is still dodgy as hell. During a  previous experience (voting in a different constituency, that of our current Prime Minister no less), the wheelchair access to the polling station was a very makeshift wooden ramp. I was able to enter the polling station fine, but when I tried to get out, the ramp slipped and I ended up stuck suspended over a significant drop, praying my heavy electric wheelchair didn’t tip over and you know, crush me. And yes that’s just as terrifying to experience as it sounds.

Overall, what should have been a simple 15 minute job to vote recently took over an hour simply because of inaccessibility. I hope that my discussing this experience gives you some insight into the reality of voting as a disabled person.

Stay Invincible!

Em (Invincible Woman On Wheels)

Birmingham Travel: New Street to Sutton Coldfield as a Wheelchair User Under National Lockdown? Here’s How I Did It

Recently I had to take a few trips to Sutton Coldfield for some course training (whilst we were still under national lockdown) , so I thought I’d let you know what the experience was like (travelling from Birmingham New Street) as a wheelchair user. I had to take this trip a total of 6 times (3 outbound and 3 return) but this post is just about the first outbound and return trip.

Outbound

Ticket Buying, Assistance Booking & Getting On at Birmingham New Street

When it came to booking the assistance, it was pretty much the standard process, I just called West Midlands Railway and booked the assistance over the phone. I did not have to give my wheelchair dimensions this time as I had already given them for a previous assistance booking and they were stored in the system. The ticket situation is where things get a little more complicated. Initially I thought since both stations were in the free travel blue zone on my disabled travel pass that I would be able to travel for, you know, free. However, it turns out that free travel thing is only for after  9.30am and my train was at 8.25am. Cue a dash to grab a last minute ticket on Trainline the night before my trip. I did wonder if I could buy the ticket and manage not to use it. On arrival at New Street, the staff let me through the barriers with just my pass despite it being before 9:30am.I then made my way to the assistance lounge and made myself know to the staff so I could get my train. I WAS able to get a partial refund on the ticket I bought on Trainline since I never actually used or registered it anywhere on my trip.

On Train

The on train experience was pretty simple as it was only a 15 or 20 minute trip so there wasn’t really time for anything spectacular to happen.

Disembarking & Leaving at Sutton Coldfield

On arrival at Sutton Coldfield, station staff were already there on the platform which meant I was able to get straight off the train. The staff then showed me a simpler route to my location which went via a separate exit to the main one. This did involve taking one lift up to the concourse level and then another lift down to the other platform before going out of the separate exit.

Return

Getting On at Sutton Coldfield

When getting on at Sutton Coldfield for the return trip, I used the same assistance booking without a  ticket (just using my travel pass) as it was after 9:30am. When it came to actually getting on the train, I ended up getting an earlier train than my booked assistance, so I informed the security staff that I needed assistance and they went and informed the station staff on my behalf as I couldn’t actually find any of the assistance staff.

On Train

Again, the on train experience was only 15 or 20 minutes so there wasn’t time for anything  dramatic to happen.

Disembarking & Leaving at Birmingham New Street

On arrival at Birmingham New Street, staff were already on the platform to greet me (as I find they usually are at New Street) which meant I was able to get straight off the train and head out of the  station.

I hope that this post provides some insight into what it’s like travelling between these 2 stations as a wheelchair user whilst under national lockdown.

Stay Invincible!

Em (Invincible Woman On Wheels)

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)

Birmingham Travel: Snow Hill to Hall Green as a Wheelchair User Under National Lockdown? Here’s How I Did It

Recently I had to take another essential lockdown train journey, this time from Birmingham Snow Hill to Hall Green for a job-related visit, so I thought I’d give you an insight into the process again since the stations were different.

Outbound

Ticket Buying & Getting On at Birmingham Snow Hill

This was a right palaver if I’m honest. Well actually, buying the ticket was because, as with my previous lockdown train travel blog post, the 2 stations I was travelling between are on the West Midlands network. This means that, with my West Midlands Disabled Travel Pass, travel between those stations is free. The assistance booking is where things got complicated. I initially phoned West Midlands Railway passenger assistance line (as it was them I was travelling with) and they requested my wheelchair dimensions prior to making the booking. This was not information I wanted to give since I did not understand why it was necessary and had not been asked for this information the recent previous time I’d travelled with West Midlands Railway.

So I decided to try and book my assistance through Cross Country Trains instead, but they were asking for the same information. In the end I just gave in and located and passed on the dimensions so I could get my assistance booked.

Further discussions informed me that asking for the dimensions is a nationwide policy that was introduced around 18 months ago (which makes sense as it’s around that time that other train companies I used started asking for the information). However, I was also told that you should be asked for the dimensions once and then it goes onto the system, so hopefully that’s me done having to give the dimensions.

BUT the dimensions saga wasn’t even the end of my issues! I originally wanted to travel from Birmingham Moor Street to Hall Green, but the lifts at Moor Street are currently out of order, which makes the platforms inaccessible to me. So I had to make decision to walk up to Snow Hill (from where my train goes THROUGH Moor Street) and make the journey that way. Other than these accessibility issues and the additional request for dimensions, the process of booking assistance was broadly the same. On the day of my trip, I arrived and made myself known to a staff member who said that another staff member would meet me on the platform. I should also say that I arrived at 11am for a train that departed at 11:07 and was still put on the train with time to spare, so this request that those who need assistance turn up 20 minutes early for their train definitely seems excessive and somewhat unnecessary.

On Train

The actual journey was only around 15 minutes so there wasn’t time for anything too dramatic to dramatic to happen. One thing I would say is that on this train the wheelchair space involves parking against a flip down seat, which is difficult to do when the seat won’t stay flipped up, because you have to try and park whilst holding the seat up at the same time!

Disembarking & Leaving at Hall Green

When the train arrived at Hall Green, there was no sign of station staff. Then, despite multiple yells for help, the doors closed and the train began moving away with me still onboard. This meant I had to press the emergency button and stop the train in order to get off. I was then informed that staff had recently switched over and incoming staff were not informed I was on that train or required assistance, even though I booked assistance ahead of time as per the system. Once I FINALLY got off the train, it was a simple case of heading up the ramp and out of the station.

Return

Getting On at Hall Green

For the return journey I was using the same “ticket” (my disabled travel pass) and had intended to travel on the same assistance booking. However, my appointment finished early which meant I could catch a significantly earlier train. I informed staff that I wished to catch an earlier train and from there it was a fairly simple process, as they just cancelled my later assistance booking and put me on the next train back to Snow Hill

On Train

Once again, the actual journey was only about 15 minutes so nothing dramatic happened. The flip down seat in the wheelchair space actually stayed flipped up this time, which made it much easier to park.

Disembarking & Leaving at Birmingham Snow Hill

On arrival at Snow Hill, a staff member was waiting on the platform with a ramp which meant I could simply go down the ramp and get straight off the train. I then decided to make a bathroom stop before leaving the station but realised I didn’t have my radar key so I asked staff if I could borrow their key. It turned out the toilet on my platform had issues with the lock and someone had shut the door (staff usually left it open) which meant the lock had jammed. Thankfully, staff managed to get the door open with a pair of scissors in the lock. They were very helpful and saved me having to make a trip to the other disabled toilet on a platform (yes I know I shouldn’t have to be thankful  about being able to use the bathroom like everyone else, but I really appreciated their working to fix the issue rather than fobbing me off with an excuse.)

I hope this post has provided some insight into what it’s like travelling between Birmingham Snow Hill and Hall Green with West Midlands Railways as a wheelchair user under national lockdown.

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)

Enola Holmes Book Tag

Something a little different from me today. I was previously quite an avid reader (cheers academia for ruining that one for me) and still have a bookcase FULL of books I would love to read but lack the motivation to do so. So I am thankful for the opportunity to think about and discuss books in a non-academic way again. Which is why I am extremely thankful to Hannah from Hannah’s Bookshelf for tagging me to participate in the Enola Holmes Book Tag  and to  Bellerose Reads for creating the tag in the first place. Firstly, I’ll outline the rules of the tag, then I’ll answer the prompts, then I’ll nominate 5 other bookish bloggers to join in and answer the prompts themselves.

Oh just a little heads up, that little “previously avid reader” part means I don’t really read that much anymore (although this tag has me picking the habit back up). I’m probably not going to be discussing that many books here so if you’re looking for a wide variety of literature this isn’t the post for you.

Rules

• List the rules and the prompts of the tag in your post.
• Thank the person who tagged you and ping back to their post.
• Give credits to the creator of the tag Bellerose Reads, and ping back to her post.
• Tag at least 5 people.

The Prompts and My Answers

Enola Holmes: name an independent and smart female protagonist.

That would have to be Eve Rosser from the Morganville Vampires Series (which I’ve not finished yet so no spoilers in the comments please!). She’s just so badass and confident and  takes no messing about from anyone. I think that’s particularly key considering she lives with two fairly macho, confident boys in the series. Plus I just want to be that confident.

Sherlock Holmes: name your favourite mystery/thriller book.

This would DEFINITELY be The Snowman by Jo Nesbo. I just randomly picked this up from a market stall on a whim once, and now I could read it 1000 times and not get bored. The twists still get me every time.

Eudoria Holmes: name a character that defies the rules of their society.

Can I pick the same character for two prompts? Ah hell I’m doing it anyway. This would have to be Eve from the Morganville series again. Dressing goth style with skulls and literal wooden stakes must be the ultimate in defying society when you live in vampire land right? Plus I just LOVE Eve’s style. I want her clothes, I want her car, I swear I want to BE her.

Mycroft Holmes: name the most annoying character you know.

Harry Hole from the Harry Hole Series by Jo Nesbo. I think it’s the psychologist in me, but watching him go from clean and sober, back to addiction and then fighting to get clean again (assuming I’m reading the series in the right order? I’m never too sure given that the English versions are translations) has me screaming “ PLEASE GO TO THERAPY AND GET SOME ACTUAL HELP”. But I guess that’s because I’d kinda add him to the next prompt, because I want to protect him too.

Lord Tewkesbury: name a character that you want to protect at all costs.

100% Shane Collins from the Morganville series (can you tell I love this series, is it obvious?!) It’s not often I’ll laugh out loud at a book or find myself grinning as I’m reading but Shane’s characters always has me laughing or smiling at the book. Would it make sense if I said he’s written in a way that makes it feel as if you’re being hugged through a book? Do my fellow bookworms get what I mean? The warmth of his character is just really nice, particularly in these times when I have very limited social interaction with real human beings.

Inspector Lestrade: name a loyal side character.

Rakel from the Harry Hole Series. In the ones from the series that  I have read (yes I’ve not finished this series either, my lack of recent reading is REALLY showing) she’s always there for Harry through everything. When I read a part where Harry’s struggling I’m always thinking “It’s ok because Rakel will re-enter at some point and help him sort everything out”. Whether being loyal to a man with as many issues and faults as Harry Hole is a good or a bad choice is another thing entirely.

Miss Harrison: name a book that aged like milk.

The Twilight Series (which awkwardly enough still sits on my bookshelf). The Edward and Bella dynamic is VERY obviously just weird and creepy now. Sneaking in her bedroom to watch her sleep?! *sounds giant “he’s a creep” warning signal*. Honestly why was #TeamEdward ever a thing? It’s just all very creepy to me now.

Linthorn: name a book or character you hated from the very beginning

Katrine Bratt from the Harry Hole Series. I remember from the moment she was introduced I felt very uneasy. I was constantly thinking “Why are you here? What do you want? Whose life do you want to ruin?” The entire time I knew she was bad news so I was just waiting for my suspicions to be proved correct.

Edith: name your favourite book with Black rep.

Is it bad that I can’t think of any books for this prompt? At least none that I’d want to recommend as actual good Black representation. And I know that’s my fault as much as it might be an issue regarding the kind of literature that’s being published. I definitely need to diversify my reading and would appreciate your recommendations of books with good Black representation, and I’ll keep an eye out for recommendations in other posts on this tag.

My Nominations

Jess at Stuck In The Book

Jackie/Robyn at Never Imitate

Lin at The Reading Den

Linz at Sunsets, Books & Wine

Dani at dmci reads

I hope everyone enjoyed reading about the bookworm side of me! Thankyou again to Hannah for the tag and for helping to remind me how much I love and missed reading!

Travelling from Birmingham New Street to Erdington as a Wheelchair User Under National Lockdown? Here’s How I Did It

Recently, I had to travel on the trains during the national lockdown which we are currently under here in England. I travelled from Birmingham New Street to Erdington (a smaller station within Birmingham) with West Midlands Railway for an essential job interview. I thought it would be useful to let you know what it’s like travelling on the trains as a wheelchair user during lockdown, so here’s the lowdown on lockdown train travel!

Outbound

Ticket Buying & Getting On at Birmingham New Street

In terms of tickets, I was already set up as I now have a free disabled travel pass. This allows those who have it to travel for free on trains and trams within the West Midlands network within certain times. The assistance booking process was the same as it usually is outside of lockdowns, I simply rang the phone line for that particular train company and requested my assistance at the specific date and time. They did have to make me a new account on their booking system though (even though I have booked a LOT of train assistance in my time) so I  guess that shows that not all the booking systems are connected. When it came to actually catching the train, I arrived at New Street at least 20 minutes before departure )as instructed when I booked assistance), presented my travel pass at the entry gate and was let through by a staff member. I then made my way to the assistance lounge and made myself known to the staff. When it came time to get the train is when the difference in assistance due to COVID restrictions became more obvious as it was only me allowed in the lift and not the member of staff. Once we got to the platform, the member of assistance staff made a comment that the guard (who would have to disembark me from the train as Erdington is a smaller station with fewer staff) was not going to be happy about having to use the onboard manual boarding ramp. Whilst I’m sure that was just supposed to be an innocuous comment, it made me feel like I was being seen as an inconvenience for having to travel. BELIEVE ME if I didn’t have to travel in the current circumstances I wouldn’t be doing so, but the fact of the matter is I had to travel for work just like anyone else. Add to that the fact that helping disabled passengers is part of the role on the railways and well, if you can’t already tell, that comment bothered me quite a lot.

On Train

Onboard the train was the usual ‘board and back up into the wheelchair space’ situation. It was only a 15-minute trip so there wasn’t really time for anything dramatic to happen.

Disembarking & Leaving at Erdington

In the entire 15 minute or so ride to Erdington, the guard had not been to speak to me or check where I was on the train so I wasn’t sure what the process would be when we arrived. On arrival at  the station there was no ramp or guard to be seen and generally no sign of any assistance arriving. To add to my anxiety, I found out that I could only barely reach the ‘open door’ button if I was forgotten and the train door did close. Knowing that and with previous experience, I reverted to my usual of yelling for assistance from the train door. When that didn’t seem to do anything I headed away from the door and back into the carriage to press the assistance button located next to the wheelchair space. When the guard did arrive to disembark me, he made a point of saying “you don’t have to press that (referring to the assistance button) you just have to WAIT” . This really bothered me again as no other passengers have to wait to disembark a train, that is only necessary because the railways are not entirely accessible and I require assistance. I was also worried about how long I’d be expected to wait as I’ve been forgotten on trains before so I know that ‘just waiting’ is rarely the solution.

Return

Getting On at Erdington

When it came to making the return journey, I was using the same ‘ticket’ (my travel pass) and  assistance booking as before so that was no issue. I arrived way earlier than the train I had booked assistance for as my interview ended earlier than expected. I then made my way into the ticket office to make myself known to the staff. However, I found that the office door was only able to be opened on one side and that side was not big enough for my chair to get through. That meant that a  fellow passenger had to help and unlock the other door to allow me through, close contact which obviously isn’t ideal in the current circumstances. Getting my train was a much simpler process thankfully, I simply said which train I had booked assistance on and asked if could get on earlier train since I had arrived early. The staff member in the office (whose name I think was Richard? shout out to him anyway whatever his name may have been) sorted it with no fuss. He simply rang New Street to let them know what train I was originally booked on and that I would actually be getting the next train back to New Street, and then put me straight on the next available train.

On Train

Again I was only on the train for about 15 mins so there was no onboard drama.

Disembarking & Leaving at Birmingham New Street

On arrival at New Street, there was a staff member waiting on the platform with a ramp. That meant there was none of the disembarking hassle I’d had on the outbound journey, so I was able to get  straight off the train and head home, just like everyone else.

I hope this gives some insight into what it’s like travelling on the trains as a wheelchair user during a national lockdown.

Stay Invincible!

Em (Invincible Woman On Wheels)