Discussing Life as a Disabled School Student: Collaboration Q & A with 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)

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)

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)

Grief & Loss: The Opposite Side of Father’s Day

A heavily personal post from me today. To mark UK Father’s Day 2020, I thought I’d discuss my dad, my grief and how losing him has changed how I see Father’s day now.

Firstly, a content warning, I’ll be discussing grief, bereavement and bits and pieces of medical stuff here, so I’d suggest skipping this post if any of those are likely to significantly upset you or bring up any of your own experiences.

I guess if I was to explain this post in a sentence it’s exploring the opposite side of father’s day. As I said in the mini introduction, the publication of this post coincides with UK father’s day 2020 and is also a couple of days short of the 2-year anniversary of my own dad’s passing. Since he passed away, I’ve begun to see Father’s day in a different light. Of course, there are those who have been father figures to me that I can still celebrate. Men like my own stepdad, who has been there for me for years whilst my dad was still here and has continued to be there for me since my dad passed away. But father’s day is still different. All the emails from brands and venues about father’s day gifts and reminders, and every blogger “father’s day gift guide” that I see is a stinging reminder every single time that my dad is no longer with us. Now, I’m not saying don’t write that content or for brands not to send those emails, I just don’t think we see this side of the situation as often (how people approach certain days and occasions after a bereavement). So, I thought I’d explain my side of it and how fathers’ days is different now.

I didn’t see my dad often, we lived at pretty much opposite ends of the country for a good portion of my life, so I never made a very big deal of father’s day. I’d just send him a “happy father’s day”  message, and a present if I could find a particularly good one that I thought he’d enjoy. Oh, how I  regret that now he’s no longer here, I so wish I’d made a bigger deal of Father’s day when he was here.

Father’s day was different once I’d received a phone call that turned my world upside down, telling me that my dad was ill and that we’d have to rush up to the hospital (hundreds of miles away). I didn’t fully know what was going on, but I knew I had to organise and sort everything to be ready to drive up to the hospital in the morning. It’s pretty difficult to organise your life when it feels like the world’s spun on its axis and the ground’s dropped out from beneath you all at once.

Father’s day becomes different because all I can remember is my dad’s last father’s day  with  him in the ICU (Intensive Care Unit).  All of us (I have siblings) bringing cards and wishing him a happy father’s day. I can’t tell you how heart-breaking that was being unable to know what he thought of his cards or if he could actually hear us.

Father’s day is different when I realise that I spent the whole lead up to that day 2 years ago (basically the whole of June) discovering that the man I thought was invincible and immortal (because everyone thinks their parents are immortal right) actually wasn’t.

Father’s day becomes different when I remember the days and nights I spent trying to sleep in an ICU waiting room or relatives room wondering if dad was ok whilst the rest of us slept. Terrified to go to sleep in case he wasn’t with us when I woke up. Begging for someone to sit with him whilst I slept so that he wasn’t alone if something did happen.

Father’s day is different when I remember that,  instead of spending those June days chatting to dad and planning our trip to Madrid, I was cancelling the trip and wondering if I’d be helping to plan a funeral instead.

Father’s day will be different when I go to text him that same “ happy father’s day” message and realise I can’t because he won’t respond anymore.

Father’s day will always be different when every sentence talking about that wonderful man has to start with “dad was …” and not “dad is …”.

I’m not sure where I was going with this blog post. But what I’m saying is: Beyond the brands “father’s day” emails and adverts and the bloggers “ father’s day gift guides”, there’s a different side,  a different feeling to father’s day for me and those like me who no longer have the man we call dad with us. And I think that should be talked about more.

Happy father’s day, dad. I love you and I’ll miss you forever

All my love

Ems