Undergoing a Cervical Screening as a Wheelchair User with Cerebral Palsy

The photo on the left hand side of the image is Emma, a young white woman with brown hair and tinted glasses, smiling into the camera whilst sat in her wheelchair. She is wearing a red check shirt, red leather jacket and a purple face covering around her neck. The blue text on the right hand side reads "Undergoing a Cervical Screening as a Wheelchair User with Cerebral Palsy"
Original Photo Credit: Dev Place Photos. Image Description: The photo on the left hand side of the image is Emma, a young white woman with brown hair and tinted glasses, smiling into the camera whilst sat in her wheelchair. She is wearing a red check shirt, red leather jacket and a purple face covering around her neck. The blue text on the right hand side reads "Undergoing a Cervical Screening as a Wheelchair User with Cerebral Palsy"

As a woman approaching her 25th birthday (the quarter century is approaching rather quicker than I’d like) I was recently invited to and underwent my first cervical screening (or ‘smear test’). I thought I’d let you in on how the process went for me as a wheelchair user in case anyone else is in the same situation and would like some insight.

Receiving the Invitation

Since I am almost 25, I received a letter in the post inviting me to book my cervical screening via my GP. I instantly began what the process was and what pitfalls I may encounter or additional access needs I would have as a wheelchair user with Cerebral Palsy.

Booking the Appointment

When it came to booking the appointment, I’m registered with an online/digital GP service who also have physical locations. This meant I had to book the screening appointment over the phone in order to get an appointment at the actual GP surgery. I tried that for a few days but wasn’t able to get an answer or book an appointment. So, as I often do, I took to Twitter. This eventually lead to me getting a call back from the doctors and I was able to arrange the appointment. Throughout the appointment booking process, I didn’t mention my Cerebral Palsy. This is because I knew the doctors surgery was accessible since I’d been before. Plus I believe my Cerebral Palsy isn’t relevant to a situation until it is relevant, so it’s a “we’ll cross that bridge when we come to it” kind of situation. Also, given that this is my doctors we are talking about, I figured my lifelong medical condition would be on record already anyway.

The Actual Appointment

On the day of the appointment, I just walked to the surgery, entered, and waited to be called in for my appointment. Once I was called into the appointment, the nurse explained what would be happening and asked some basic questions. I found the tone of the explanation kind of patronising, but I did wonder whether it was just explained in that time because it was my first time having the screening? When it came time to start the screening I just parked my wheelchair beside the bed and transferred over. The nurse then asked me to remove my underwear, shoes, and socks. I was somewhat annoyed at the need to take off my shoes. I’d specifically worn a skirt to the appointment, since I know putting on shoes is difficult for me and I hate struggling with tasks in front of people. I was then asked to widen my hips and flop my legs out to the side. This kind of request is something I’m used to from medical professionals since I’ve spent a lot of my life having  doctors testing my hip flexion which is somewhat a similar position. I was, however, aware that my legs weren’t evenly flat (due to muscle tightness from my Cerebral Palsy) and wondered whether that would affect how easy the screening would be. In order to obtain a sample, the nurse inserted a speculum. It was somewhat uncomfortable and took 3 attempts to get a decent sample. I think that was probably somewhat because of the muscle tightness from my Cerebral Palsy as well. Once a decent sample was obtained and the screening was over, I simply  cleaned myself up, redressed (leaving my shoes off until I got out of the room so I could struggle in peace) and transferred back into my wheelchair and the appointment was done. I didn’t have any pains afterwards that I was aware of. Also, for those who are bothered, my screening came back clear so I don’t need to undergo any further testing or intervention until 2024.

I hope this provides some insight for other wheelchair users (or those with other disabilities and access needs) who want or need more information on the process of undergoing a cervical screening.

Stay Invincible!

Em (Invincible Woman On Wheels)

Experiencing Harassment and Stranger Interactions as a Disabled Woman

The photo on the left hand side of the image is Emma, a young white woman with brown hair and tinted glasses, smiling into the camera whilst sat in her wheelchair. She is wearing a red check shirt, red leather jacket and a purple face covering around her neck. The blue text on the right hand side reads "Experiencing Harassment and Stranger Interactions as a Disabled Woman".
Original Photo Credit: Dev Place Photos. Image Description: The photo on the left hand side of the image is Emma, a young white woman with brown hair and tinted glasses, smiling into the camera whilst sat in her wheelchair. She is wearing a red check shirt, red leather jacket and a purple face covering around her neck. The blue text on the right hand side reads "Experiencing Harassment and Stranger Interactions as a Disabled Woman".

Recently, I experienced 3 different interactions in the space of 5 days that really stuck with me (in a bad way). Two of them were very clear cut harassment and one more what I would call a ‘stranger interaction’. This is something I know other people, and specifically other disabled people, have  talked about, so it’s something I thought I should discuss. Firstly, I wanted to just address why I have separated stranger interactions and harassment in the title, because frankly the answer is I don’t know why. Initially, I was going to address these two things as separate ideas in two separate posts, but as my friend Dev pointed out over on my Instagram, there’s a whole bunch of overlap between the two ideas. The definition of harassment  is ‘unwanted behaviour’ which the person finds ‘offensive’ or which leaves them feeling ‘humiliated or intimidated’ and asking a disabled person you have never met how they have sex (which strangers often do) is DEFINITELY ‘offensive’, strangers talking to me is also generally ‘unwanted behaviour’, like, if I don’t  know you, please don’t randomly spark up a conversation. I guess what I’m saying here is stranger interactions ARE harassment as a disabled person and I don’t know why it’s taken this long for that to click for me.

Now on to the actual incidents. This first one, the more ‘stranger interaction’ type incident, happened in the middle of my mission to vote in the latest round of elections. A woman stopped me in the middle of the pavement and started the conversation with “I don’t mean to accost you dear”.  BIG red flag here, if you “don’t mean” to accost me, then…don’t. If you say that then continue talking to me, your ‘accosting me’ is 100% intentional. She then proceeded to tell me this story about her disabled friend and some funny nickname a random kid had given to the friend’s wheelchair once. This struck me as odd for two reasons: 1) Don’t reveal your friend’s status as a disabled person to a random stranger, that’s personal information and I just… nah don’t do that, and 2) You thought that little anecdote was worthy of stopping a stranger in the middle of the street who was OBVIOUSLY in the middle of doing something? Kids say cute things about mobility aids all the time, I’ve heard stories like that at least weekly for like the past decade. I wasn’t entirely sure how to react to this rando, anecdote. This woman then became somewhat annoyed about my lack of reaction (my face is the kind that can’t fake a reaction if I don’t actually care about what you just said) which was odd. I’m not a performing monkey who’s going to react positively because you’re telling me a story involving a disabled person and I AM a disabled person. But at the same time I’m also trying not to anger this woman in case the situation escalates and she gets more annoyed and tries to attack me or something, which sounds entirely ridiculous. WHY am I still altering my response to harassment as a disabled person in the year 2021 purely out of fear of being attacked for reacting ‘wrong’?

I think I’ve figured out why I previously saw these stranger interactions as different from the clearer cut harassment  is that these incidents are often framed as people “just trying to be nice” or “just trying to communicate/start a conversation”. If all you can find to discuss with me is disability related, that doesn’t sound like you want to know me, that just sounds like you want a free disability encyclopaedia. Also why are we still giving people props for  “trying” to communicate with disabled people? it’s 2021 for pity’s sake, I’m disabled, I’m not an alien, communicating with me is NOT that difficult.

Now onto the incidents of clear cut harassment. Both of these involved strange men giving  “compliments” to my friends and I as we sat having coffee. As a  disabled woman, I’m always scared of these kind of incidents happening, because I can’t get away as easily. In the first of these two incidents, the man was ‘complimenting’ my friends but not me. Was that because I’m disabled? Was it because I was not responding to him? Who knows, what I do know is that I immediately jumped to making sure I wasn’t going to anger him and trying to find what weapons I could use to defend myself if he attacked. I grabbed at my keys, checked that my footplates were down so I could catch his ankles, and checked whether I was at the right level to drop kick him in the crown jewels if he grabbed me. I also began wondering what I’d do if I was alone in this situation, because I  couldn’t easily enter shop the coffee shop we were at to get help. I also noticed a severe lack of bystander intervention in both incidents, other than some shocked looks when I told the guy in the second incident to fuck off (*gasp* the disabled girl said a sweary word). Thankfully, I was able to get away from both harassers, in the first instance, I was able to drop a little signal hint to my friend who went inside the coffee shop to get help, and then the staff there were able to shoo the harasser away. However, in the second incident both myself and the friend were wheelchair users and so couldn’t  enter the coffee  shop to get help (and our path into the shop was also blocked by the harasser at some points). Luckily, we know the staff in that coffee shop quite well and so they saw us having issues and came out to stop the harassment.

I don’t really know why I wrote this blog post other than to get these incidents off my chest and show you that harassment does happen to disabled people, perhaps more often than you think.  Disabled women in particular are at higher risk of being harassed and assaulted. In fact, according to the disability and crime report published in 2019, disabled women are twice as likely to be sexually assaulted or harassed than non-disabled women. I don’t know for sure why this but I’d guess it’s because we’re seen as an easier target.  I think this is because it’s harder for us to get into a venue to ask for help and it may be harder for us to physically defend ourselves from attack.

Oh and while I still have your attention, asking disabled people random questions about their disability or their lives IS harassment, no matter how you frame it. Search engines exist, if you have questions about life as a disabled person, use them, disabled people are not your rolling encyclopaedias of disability knowledge. Orrrrrrrrrrr, you could just check out the rest of my blog and see if any of my posts answer your questions.

Stay Invincible!

Em (Invincible Woman On Wheels)

Discussing Life as a Disabled School Student: Collaboration Q & A with Buttons and Ramps

A selection of photos and text on a white background. The image on the left hand side is Emma, a white woman with brown hair and glasses, smiling into the camera. The image on the right is Melissa, a white woman with brown hair, smiling into the camera There are also 3 sections of blue text written underneath each other in the centre of the image. The top centre text reads "Discussing Life as a Disabled School Student". The middle centre text reads "Collaboration Q & A" and the bottom centre text reads "With Melissa From Buttons and Ramps"
Original Photo Credit for photo of Emma: Dev Place Photos. Image Description: A selection of photos and text on a white background. The image on the left hand side is Emma, a white woman with brown hair and glasses, smiling into the camera. The image on the right is Melissa, a white woman with brown hair, smiling into the camera There are also 3 sections of blue text written underneath each other in the centre of the image. The top centre text reads "Discussing Life as a Disabled School Student". The middle centre text reads "Collaboration Q & A" and the bottom centre text reads "With Melissa From Buttons and Ramps"

A very exciting collaboration for today’s post. A little collaborative Q & A with Melissa from Buttons and Ramps discussing our experiences as disabled students within the school system. These are the questions I asked Melissa and her answers, and you can find my responses to her questions in her blog post over here. Anyway, enough with the babbling on and on with the Q & A.

  1. Are you the only disabled person in your school? How open was your school about their accessibility/becoming accessible?

There’s now another wheelchair user in the year below me, but when I started school I was the first person in a wheelchair to go there, and my family and I were very much discouraged by the council and told to go to a more accessible school. At first, there were lots of makeshift ramps and teachers who looked like they’d never seen a wheelchair before but eventually teachers learned to adapt lessons and lots of the doors in the corridors were wedged open for me. There’s still no lift, but luckily I’m able to go upstairs with a little bit of help.

2. Could/can you access all the different lessons? (dance/PE/other subjects?) What is your school’s response like if you can’t?

In S1 (the first year of secondary school in Scotland, when I was 11 or 12), I was encouraged to do every subject but I had most of my classes in the same rooms on the ground floor which annoyed me and my classmates. I’ve found that the accessibility of subjects really depends on the teacher. For example, in S1 my art teacher really encouraged me even though my hands were shaky and the lines I drew weren’t straight but in S2 my art teacher marked me down and told me not to continue the subject simply because of my shaking. I think if a teacher understands accessibility and is able to adapt lessons, it makes a big difference. There have been few occasions that I’ve been excluded from lessons but if I do ever feel at a disadvantage, I’m able to speak to my pastoral care teacher and it always gets sorted.

3. What was one concern you had going into secondary school?

I had many concerns going into secondary school, my biggest concern was how the other pupils would react to me. I was anxious about being in a wheelchair as well since I hadn’t had much experience in an electric chair before and I’d never imagined myself being in a wheelchair all the time. I didn’t want to be known as ‘the disabled kid’.

4. What is one concern you have now about the next transition – college/uni/whatever?

I’m still unsure of where I’m headed. I’d quite like to go to a conservatoire and see how far acting could take me, but I also need to be realistic and have a back-up plan. If I can’t go to a conservatoire, I would like to go to university and study English and writing. I would love to be an author or playwright as well as being an actor. I worry that my disability will limit me, especially in acting. I don’t want to end up losing out on the opportunity to act because of the way I speak or how I move. My disability shouldn’t affect my writing in theory, but it’s always funny how even things you wouldn’t assume would be different are. I just hope that whatever I’m doing, I’m happy and able to have the same quality of education as I would if I weren’t disabled.

5. what is one piece of advice you’d give to younger disabled person about school?

School is never easy for anyone. It’s important to understand your own self-worth and to be able to learn to advocate for your own needs, even if you have people who would be willing to advocate for you. Your disability is a part of you, but it doesn’t define you or limit what you can do. If people aren’t willing to understand your disability and learn how to accommodate you, they are in the wrong. You are entitled to the same quality of education as anyone else, even if it looks a bit different from your peers’ education. Treat yourself with respect and don’t let anyone but yourself dictate what you’re capable of.

6. How is the social aspect of school for you? How do other kids react to your disability?

It’s been the most challenging aspect of school for me. I’ve kept a few close friends from primary but I’ve really struggled with making new friends. I’ve found that as much as my wheelchair helps me, it’s also sometimes a barrier for me because people see it and immediately make assumptions about who I am. My speech impairment also doesn’t help much as secondary school is very fast paced and people don’t really have time to listen to me and tune in to the way I speak. I’m also someone who’s very outgoing with people they know but I tend to be pretty shy with new people, especially of my age. I find it hard to know what groups to approach and tend to just stick to talking to the same few friends I have. People are very nice to me but I find that I’m often people don’t make the effort to actually become friends with me. I think secondary school is generally not a great environment for anyone who doesn’t fit into social normalities but being disabled definitely makes things more challenging.

7. How did you find receiving support at school (i.e. teaching assistant support)?

At first I wasn’t keen on having support. I wanted to be just like everyone else but having assistants to help me with daily activities and lessons definitely makes my life easier. I have great relationships with all of my assistants and I actually really enjoy their company. I have one assistant who I especially love and I honestly think I would have moved school if it weren’t for her. Having someone to talk to (even if it’s a middle aged woman) is really helpful and valuable. I think it’s so important that you have good relationships with teaching assistants, it’s so beneficial to be able to communicate what you need and how you feel in order to have the best education possible.

8. What is one topic about school/uni you’d like to see me discuss/discuss more on my blog?

I’d love to hear more about your experiences with university (getting in, learning how to be a disabled student) and how your attitude to disability has changed in adulthood.

I loved reading Melissa’s responses to these questions and I hope you did too. Don’t forget to check out my responses to her questions in her blog post here.

Stay Invincible

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

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"
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.

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)