How to Own Your Startle Reflex

Emma sits in front of a blue table with teapots and mugs on wearing a vest bearing the Gryffindor house crest from Harry Potter
I may be wearing Harry Potter merch but it shouldn't be an invisibility cloak Photo Credit: Keshia Asare

This post is something a little different. This one’s about how I came to own my startle reflex and advice I’d give others with a startle reflex if they want to become more confident about their own startle reflex. For those who don’t know (and I didn’t understand it entirely until I read this quick explanation by Annie Nason) the startle reflex is a reflex that babies are born with which usually goes away by 6 months old. However, it never fully disappears in those with cerebral palsy. And can often lead to heightened responses and being jumpy to things that wouldn’t make other people jump.

My startle reflex used to be something I found embarrassing as I thought people would be staring and wondering why I was reacting to things (such as doors slamming) in the way I was (often exaggerated looking jumping).

With that in mind, here’s my 3 tips, for those with cerebral palsy, for owning a startle reflex. Obviously, these won’t be appropriate for everyone but they’re just the things that helped me, and I hope they can help others.

Explain

Explaining the reflex to other people may help them understand the reflex and perhaps stop any staring or reactions. Obviously, this depends how comfortable you are discussing your condition and how well you know the person you’re talking to. Obviously, strangers aren’t entitled to your medical information, but if there are friends, flatmates or family that may often see you startle it may be helpful to explain it to them so they’re not constantly curious (as most of the reactions are just curiosity from my experience). Besides which, being able to counter someone laughing at you with “yeah it’s a disability thing” and watch their face fall as they realise that they’re THAT person who laughs at a disabled person is a wonderful thing, or maybe I take too much pride in making other people squirm with embarrassment?

Help limit it where you can

I know this may not be possible as anything can trigger a startle, but if you are nervous about your startle reflex and know something repeatedly startles you it may help to help yourself limit the startle where you can. For me personally, the noise of concerts and loud drums pretty consistently triggers a startle. Obviously, as a girl who loves a concert, this isn’t great news. So, I constantly learn the lyrics and drum patterns for songs when I know I’m going to a concert (to the point of learning every single word of every single album months in advance). This means that by the time the concert rolls around, I’m likely to know where all the loud snare drum hits are so I’m expecting them and less likely to startle. Obviously, it doesn’t get rid of startles completely, but it certainly limits how much I startle and how affected I am by those startles in terms of confidence, so I think it’s good to know when you’re most likely to startle and to help mitigate it if and where you can, or even just learn when you startle most often so you can be less surprised by your own startle reflex and maybe you’ll start to just see it as an ‘oh yeah that happens’ kinda situation if you’re expecting to startle at certain things.

It may be easier to approach dealing with your startle reflex in a situation you’re happiest in

For this, I’m again coming from my own experience, but for me my startle reflex being at its worst at concerts and with loud noises was actually a blessing in disguise. My initial embarrassment at startling in public was counteracted by my love of concerts. I realised that even IF people WERE staring when I startled, I just didn’t have the time to care as I was having too much fun at the concert. This experience also made me more aware that the way I imagined reactions in my head was different from reality, where I thought people would stare if I startled, they actually weren’t bothered in the slightest because they were too busy watching the concert. Now I’m not saying put yourself in a situation where you know you’ll startle to help you become more comfortable with it (that contradicts point 2 and I’m not really here to contradict myself) but just think about what would make you feel most comfortable about your startle reflex and go from there. Maybe it’s easiest to explain to a certain person first? Or maybe you want to have someone with you while you explain your startle to someone else? Or maybe you DO want to be like me and throw yourself in somewhere you know you’ll startle to get comfortable with it? However, works for you, just start in the way that makes you the most comfortable and you will get more comfortable with your startle reflex as you go.

It may take a day, a week, a month, a year or a lifetime (my startle reflex still frustrates me occasionally and I supposedly “own” it) but you will come to see your startle reflex as just another part of you and your cerebral palsy, no matter how miserable and frustrating it seems at the moment. I hope my suggestions are at least a starting point in helping you learn to accept your startle reflex as just another part of your cerebral palsy.

Stay Invincible!

Em (Invincible Woman On Wheels)

Save St Nicholas School in Chippenham

Today, I’m moving away from my usual content to draw attention to a petition to save St Nicholas Special Needs School in Chippenham, a school in my local area (when I’m not at university in London).

Wiltshire County Council is proposing to close 3 special schools in the county, including St Nicholas’ and creating a ‘super school’. The Parents and Friends of St Nicholas School group have started a petition to stop the closure of the school as they believe it is not in the best interests of the children. I’ll explain why here (all these reasons are from the petition, which I’ll link at the end of this post):

Children need to be educated in a community

The current location of St Nicholas lets the students learn life skills with trips to local shops and parks and around the local area of Chippenham. The location of the new super school is very rural with few amenities. How are the students supposed to learn necessary life skills if there’s nowhere to put them into practice?! Also, this rural location makes me think this is an “out of sight, out of mind” move from the council, and frankly that’s more than a little upsetting. As someone who has had the privilege of meeting even just a few of these children, I can tell you they are some of the most wonderful people I’ve ever met, and the Chippenham community needs them as much as they need to be part of the community for their own learning.

Parents deserve a choice of schools to send their children to

Parents who send their children to mainstream school have a choice of which school they send their child to. Parents of those children who need to attend a special needs school should have the same choice. Currently, with multiple special needs schools in the county, this choice IS available. But if the plan goes ahead that choice of school will be removed for these parents as they’ll HAVE to send their child to the one super school, what with it being the one special needs school in the county. Parents should have a choice about what school their child attends, whether that’s a mainstream school or a special needs school.

Children deserve an APPROPRIATE education

Every child deserves an appropriate education. Why I’ve made a big deal of specifying “appropriate” here is because it isn’t just about making sure every child gets an education, it’s about ensuring every child gets an education that is the best for them and works for them. For the children attending St Nicholas, that best version of education is in the smaller classrooms, with small class sizes and teachers and professionals who know each student like they are family. This will all likely be lost with the super school where everything will HAVE to be larger and less individual to accommodate all the students it needs to.

It puts children’s health at risk

The remote location could mean each child travelling for around 3 hours a day (1.5 hours each way) to get to school when you take into account traffic and multiple pick ups. This extended journey time could impact the health of children, such as by inducing seizures in those with epilepsy. This is compounded by the fact that the new location is further away from the 2 main A&E departments in the area. Therefore, if there is a medical emergency, the necessary help is further away. I’m not sure anything else needs to be said now, because frankly, if “it’s potentially putting children’s health at risk” isn’t enough to persuade you that this super school is not in the interests of the children, I’m not sure what I can say to persuade you.

If you believe as strongly as I do that St Nicholas school shouldn’t be closed, sign the petition and/or contribute to the crowdfunding effort for the legal challenge .

Stay Invincible!

Em (Invincible Woman On Wheels)

TEDx Speech

Further to my earlier blog post about my experience of the Brunel TEDx talk auditions, here is a transcript of the speech I gave at my audition. I tried to keep the actual speech as it was written here, so you can get the full effect of what I said.

20 years ago, the doctors told me something that would change my life, or at least something they thought would change my life. 20 years ago, I was diagnosed with Cerebral Palsy (a neurological condition that, as you can see, means I ended up with a snazzy set of wheels). I’ll come back to why I don’t see my diagnosis as life changing at the end of this talk.

I run a blog called InvincibleWomanOnWheels where I write venue accessibility reviews, disability travel stories and discussion of disability issues, but this talk is less about what I write and more why.

So, since InvincibleWomanonwheels is MY blog and these (points at chair) are wheels, that must make me the Invincible Woman, right? Wrong, if I AM the invincible Woman, I’m the second generation, the first is my mum. She was the one who sat and willed me through being 10 weeks premature and the size of a stuffed snake toy, to being the tough as nails, stubborn as hell, will “not give up until she reaches her goals” 21-year-old invincible woman on wheels that I am today. She heard every no as no’one’s done it yet, because these doctors never knew the world from my viewpoint, and for that I’ll always be grateful.  And that “we’ll figure it out” has sort of become a mantra. The amount of times I’ve answered, “how are you going to…” with “I’ll figure it out” I’m starting to sound like a broken record.

You see, the problem is that everyone focuses on this idea of disability as negative or limiting, it’s in all the definitions, so disability needs to be redefined. and I’m not saying that InvincibleWomanOnWheels is the whole solution, I’d never say that, but I certainly want to be part of the solution!

The point behind InvincibleWomanOnWheels is to carry on those messages that my mum taught me for the next generation, to be a guiding light for the parents who don’t know where to turn when their child is diagnosed, for the children who don’t know how they’re going to overcome their disability and achieve everything they want, because when every “expert” says no or can’t, you’re likely to believe them right?

But you don’t have to, anything is possible. Surely you can’t live in the capital where only 26% of the underground network is accessible? Watch me, surely a girl’s holiday with no parents can’t happen? See me drive up the side of Mount Etna, to quote Sinatra: I did it my way, and you will too.

you’re probably wondering why I write a blog rather than do speeches like this, and to me it’s because “seeing is believing” and, as disabled people, we spend so much time having so many different “experts” tell us many different things that you don’t know who to believe and so it’s easier to just see the message rather than hear it.

Now seems a good time to come back to what I said at the start, that for me this disability isn’t life changing, and that’s because life changing suggests that something has to be different or that something is different from before. But my life doesn’t HAVE to be any different from anyone else’s and I’ve never known anything different.

So, to those parents whose child has just been diagnosed with a disability, know they can still do everything they wish. And for those children with disabilities, be invincible, be phenomenal, do everything you ever wished and don’t ever let anyone tell you can’t. Think of it this way: I’m taking the exact same life journey as everyone else, I’m just doing it in a customised car.

 Thankyou

Given what I said here, I’d like to thank my mum and everyone who supported me with my audition.

Stay Invincible!

Em (Invincible Woman on Wheels)

What’s in My Gig Bags? Wheelchair User Edition

Whilst I was travelling to the latest gig I went to, it suddenly dawned on me exactly HOW MUCH I take with me when travelling for a gig. So, I thought I’d outline what’s in my bags and why. A couple of things I should say: 1. This is only what I take if I’m travelling and staying at someone’s house overnight for the gig, if I’m going out for the night and coming straight home I take way less. 2. This isn’t a “you must pack…” list, it’s simply what I take, obviously everyone would take different things to suit their needs.

The first thing to notice is the bags (plural!) part of what I just said. I have to take 3 bags with me for every gig I travel to and stay overnight as a standard, and that’s even with packing ridiculously light!

Tote Bag

The first bag is a tote bag. This is probably the most important bag as it carries my wheelchair charger (which of course I only need if I’m travelling in my electric wheelchair). Yes, that’s right, my wheelchair charger gets its own personal bag all to itself! There is a chance my wheelchair would last the whole trip without being charged but I’m not about to risk getting stranded in a broken-down wheelchair on the way home from a gig.

Rucksack/Backpack

Then there is my rucksack/backpack (depending what you want to call it) I would class this as my “real” gig bag as it contains 90% of the stuff I need when travelling. I take some pyjamas with me as the first thing, I likely won’t wear them, but I like to convince myself I’ll change out of my clothes once home from the show rather than just crashing in bed in my gig clothes. I also take clothes for the trip home the next day, this is again entirely because I like to convince myself (and everyone else) I’m an adult who doesn’t just crash in my gig clothes once home from the gig. If I’m travelling from parents’ house to London for a gig, like I was this summer, I’ll take my house key, so I can come and go as I please without interrupting anyone else’s schedule. Of course, I take my toothbrush because, well, dental hygiene, standard travel necessity to be honest. I also take a hoodie because when you leave a gig it’s usually like 11pm and cold, and let me tell you, when you have a condition that involves muscle spasticity, being cold is NOT a good idea. My phone charger is also key, so I can charge my phone before I leave whatever accommodation I’m staying in overnight and keep in contact with people while I’m out and about in case anything happens. This next item is a little blogger specific, but I always take my “blog book” and a pen so I can take notes for any venue access review while I’m travelling, for example, on the train home post gig. The final item is my blue Disabled Parking badge, if necessary. I’d only need this if I and the person I was going with had decided to drive to the venue or I was being dropped off by someone, which is rare.

Handbag

Lastly, there’s my handbag. This is the bag I actually take to gigs due to bag size restrictions at venues. The first item in there will be will be my cardholder with my railcard and freedom pass in for travel (gotta get those disabled travel discounts!) The next important is my wallet for purchasing that all-important merch (I buy merch at almost all gigs, it’s sort of my must do thing). I also take my phone, purely for staying in contact with people as I don’t take any pictures or video at gigs (yes, I’m one of those “enjoy the moment without recording it” people, but that’s MY choice and you can of course do what you like). There is, of course, the all-important ticket that I also need to take. I also take the carer ticket or carer ticket confirmation. Now, why I say either carer ticket or confirmation is, depending on the venue, the carer coming with me will either have an actual ticket that arrives when mine does or I’ll receive a carer ticket confirmation from the venue which I then have to take with me on the night to pick up the carer ticket from the venue. Some venues also ask you to bring disability confirmation on the night, such as a Personal Independence Payment (PIP) letter. However, from my experience, venues that request that you bring this confirmation never actually look at it on the night. I would still suggest bringing it if the venue requests you do so though, because it’s likely the one time you don’t bring it is the one time they’ll ask to see it!

I hope this provides some insight into what I take with me when travelling for a gig as a wheelchair user!

Stay Invincible!

Em (Invincible Woman on Wheels)

What Does “Accessibility” ACTUALLY Mean?

A black background with "Accessibility" written on it in white text, below it reads: "making a system usable for everyone, regardless of their needs" also in white text. Below that are blue images of a hand, an eye, an ear and an upper and lowercase A arranged in a horizontal line (in that order)

This post is something a little different to my usual posts. In this one I’ll be discussing what accessibility means and more personally what it means for me.

Now, when I talk about what accessibility means, I’m not talking about a definition of accessibility or access. I’m talking about the different forms that access can take depending on who it is that requires access to somewhere or something. I guess this is a more in-depth explanation of why I put that little “this is my view of venue access and access is different for everyone” disclaimer at the start of my venue access reviews.

Access means different things for different people. For some it’s ramps to allow step free access into a building and/or Changing Places toilets to allow them to safely use the toilet while out and about, for others it’s (complete, correct) captions or sign language interpreters so they can understand what’s being said, and for others it’s Braille or tactile paving to allow them to understand and navigate the world. What’s required will depend on what condition the person has, and they WILL know what access adaptations they require.

It’s not just the buildings someone is trying to enter that might have access adaptations, sometimes access includes bringing a mobility aid such as a wheelchair (or crutch, or cane, or walking frame or mobility scooter). This might not be an aid that person every time you see them (because #AmbulatoryWheelchairUsersExist) but it’s something that helps them access the world at that time. It’s something that gives them the freedom to do what they want, it’s not something they’re “bound” to or something to pity them for ( I’ve previously discussed disability and language  and things that people say and do which annoy me as a disabled person more in previous posts).

As well as access adaptations to buildings, and mobility aids, access may also come from the people we bring with us. This is one I’m guilty of forgetting but, whether it’s a guide or a PA or even just a friend to give you the confidence to get out and experience the world. Having someone there to support you can make accessing somewhere that little bit easier.

It must also be said that sometimes what is considered accessible can vary for one person, and this is where my personal experience of accessibility comes in. As those of you who have read my UFC Liverpool blog will know, the B & B we stayed in for that trip could not be considered fully wheelchair accessible (and I knew that), but it was accessible enough for the trip we were taking.   There are three factors I take into account when deciding how accessible the place I’m staying needs to be for a trip: Firstly, whether I’m travelling solo or with friends or family because if I have someone there to help me I can stay somewhere with steps into the building or a less accessible (i.e. non wet room) bathroom.

The second is what mobility aid(s) I’ll be using on the trip because if I HAVE to use a certain mobility aid, such as my electric wheelchair, there are a limited number of places I would be to stay However, I can sometimes be more flexible and  change what mobility aid(s) I use to suit where I’m staying if there’s a specific place I want to stay or somewhere that’s been recommended.

The final factor is how long I’m staying in a place, certain situations such as a less accessible (i.e. non wet room) bathroom may be something I can deal with for a short overnight or weekend stay but a fully accessible wet room bathroom would be necessary for longer stays, depending on the other two factors I already mentioned (who I’m travelling with and what mobility aid(s) I’m using).

I hope this post has enlightened you to the variety within “accessibility” as a whole and even within my own view of “accessibility”

Stay Invincible!

Em (Invincible Woman On Wheels)

Brunel TEDx talk

This blog post’s a little different from my usual posts. This time I’ll be talking about my experience of the Brunel University (my university) TEDx talk application and audition process.

Well firstly, what is TED and TEDx? TED is a “non-profit organisation devoted to spreading new ideas” through events with speakers and presentations on various themes, and TEDx is simply the local, self-organised version of the wider project. When Brunel University announced they were holding a TEDx talk on the theme of The Future of Us, I jumped at the chance to apply, given my belief that Invincible Woman on Wheels can genuinely inspire a change in the wider community in the future.

The first step was to fill in the application form. On that form there were 4 sections: my name, the title of the talk I wanted to give, a short 500-word synopsis of what I wanted to talk about and the impact of my brand/topic on humanity. Now, while my name is a very straightforward answer, the talk title and synopsis were more difficult. For the talk title I decide to use the same title as the blog (Invincible Woman on Wheels), this was because I’d decided to talk about the meaning behind the blog and what I meant to achieve with it and therefore linking the blog title and the talk title seemed the simplest nod to the basis of the talk. Despite knowing I wanted to talk about the meaning behind the blog, I still found the synopsis writing a little tricky, it was difficult to distil the mission and ethos of Invincible Woman on Wheels into just 500 words. Also, even though I knew the change I wanted to inspire with Invincible Woman on Wheels, it was difficult for me to think of it in the wider context of an impact on the whole of humanity, purely because I did not expect this blog to have the global reach it now does!

Then my application was sent off, and after much anxious waiting I was lucky enough to be selected for the long list (from which the two student speakers for the event would be chosen). Now, while this may not seem like much to those who are well versed in the art of public speaking and do things like this all the time, it was a huge deal to me, particularly considering the blog is self-run by me alone and was (at the time of the application) only six months old!

Soon it came time to prepare my long list selection talk, a five-minute-long version of my full talk that would be delivered to a panel of judges who would then decide which two student speakers would speak at the event.  I had to write my speech down (which meant yes, my talk was completely scripted, don’t judge me!) because I am (or at least hope I am) better with the written word than the spoken word. I was also difficult knowing how much of my story to include in the talk. That’s because Invincible Woman on Wheels is about me but also not about me, it’s about the difference my stories can make to others and how my stories inspire others. The final part of my preparations was a run through of the talk with my editor extraordinaire Nikki who I felt understood the meaning behind the blog and the message I was trying to get across in the talk best.

When the day of my actual audition talk came, I was super nervous because, as I’ve already said, I’m not very good with the spoken word and am much better with the written word. Knowing this about myself made me very aware of what a major step I was talking by even doing the audition, and as a result I stumbled over my words frequently and was very jittery. I felt in the end that I didn’t do the blog justice, so it was no surprise to me when I didn’t make it through to the full talk (although I want to offer my congratulations to those that did. Despite falling at what was essentially the final TED talk application hurdle, it was still an honour and a massive learning experience to be anywhere near a platform like TED.

I hope this provides an insight into my experience of the application and audition process for the Brunel University TEDx talk (and please let me know if you’d like to see a full transcript of my audition talk!)

Stay Invincible!

Em (Invincible Woman on Wheels)

Why I’m Forever Grateful to Frank Turner and His Crew

Photo Credit: Ben Morse

­Everyone has that “remember that time I met (xyz celeb/famous person)” story, right? Well here’s the full glorious story of the that time I met Frank Turner (yes this is the explanation of THAT photo that is the lock screen/background of everything I own forever).

So, let’s begin at the beginning (yes that’s a lyrical reference, shush). It all started on Twitter, the way all good things do, with me lamenting the fact that Frank’s show at Alexandra Palace was not sold out when I’d expected it to be and yet I couldn’t go anyway because I had a super early lecture the next morning. Frank saw this and well, chaos ensued that ended in me basically being told by several fans on Twitter “skip the lecture you’re only a fresher you’ll make it up you can’t miss this” (fair point well made). But there was still the issue of the long travel to and from the venue, until a fellow fan offered to give us a lift there (yep, they offered to give a stranger on the internet a lift just to make sure I could get to the show #FrankFamily). AND THEN Frank himself told me to send him over an email. The email was sent, despite me not really knowing why I was sending it, turns out Frank was offering to sort out a cab, so I could safely get home from the show!  So, I was all out of reasons NOT to go!

And thus, tickets were purchased, and I asked Nikki to join me (yes editor Nikki) and she of course accepted.

Around a week or so later I got another email from Frank. This time offering a meet & greet & picture as part of the Random Acts of Kindness thing that was happening around the release of the Positive Song For Negative People album and of course I was never going to turn down a chance to meet someone I idolised (and still do) contact details were also exchanged with Frank’s tour manager Tre so we could make sure this whole thing went down without a hitch.

And then, through no fault of anybody’s, our ride to the show had to drop out just the day before, but Nikki and our friend Bella found a solution (i.e. Bella gave us a lift in her car because she’s an actual angel).

We get to the day of the show, we somehow make it around the North Circular in Bella’s tiny car and she drops us off in the car park. Nikki’s poor legs were then destroyed having to push me up the giant hill between the car park and the venue, to the point where another woman helped us up the hill. #FrankFamily again.

So, we caught the end of Will Varley’s set. And then I looked at my phone in between acts and saw a text from Tre asking if we’d got in ok and where we were sat…cue minor “holy hell this is actually real” moment.

A little while later, we were collected from the disabled platform and taken down the ramp towards backstage. And all of a sudden, a curtain was pulled back and…there was Frank! And at that point I sort of forgot speaking was possible and just sat there thinking “HOLY HELL THIS IS ACTUALLY HAPPENING”.

Nikki similarly lost her mind and we both forgot I’d actually brought a cd with me to potentially get signed. Small things to forget when such a huge moment is happening.

After hugs, a quick chat about a festival that used to be in Uxbridge (I think?) and a picture of the 3 of us, Frank had to rush back to do the show.

After the meeting, we headed back to the disabled platform to watch the show and I cried out of pure disbelief at what had just happened (you think I’m joking, I genuinely cried for a good half of the Skinny Listers’ set).

After singing along to every single word of every single song and dancing until I felt like I was going to fall apart, the show was somehow over, and we waited for someone to come and get us to take us to the prebooked cab home. But not before security tried to take us out of the side door with everyone else and were told “they’re with the band” (I’ve always wanted to be “with the band”!)

We were well looked after and felt like VIPs all night, and that was appreciated more than you can imagine. or VIGs (Very Important Ghosts) as Nikki likes to say, as the colour drained from our faces and we looked like ghosts when we met Frank (I thought I was playing it cool but apparently not!).

This was one of those experiences that made me realise anything is possible if people are willing to help you make it work, one of those things that sparked the #InvincibleWoman within me. I’d heard about the #FrankFamily, how it’s more than a fanbase, how once you’re in you never really leave no matter how many shows you can’t get to, how you’ll make friends that you’ll never lose. that was exactly what I needed given that the show was one of my first major events living in London, or away from home at all. And that’s exactly what I got, for that I’m forever grateful. #FrankFamily

I’ve seen Frank since in Kingston, but I’ll never forget that first show or the lengths he and the rest of the crew went to give me a night I’ll talk about forever.

Since that show, I’ve made a promise to myself that I will go to every show I possibly can, because that’s the only thankyou I can give that seems to go anywhere close to how many thankyous I need to give. On that note, if anyone’s at the Saturday of Lost Evenings Festival (12th May) feel free to say hey!

Also, for those wondering, here’s a 2-and-a-half-year update on that meet & greet picture (minus Nikki because she couldn’t make the signing) and that elusive signature since I forgot to get it at Alexandra Palace.

Stay Invincible!

Em (InvincibleWomanOnWheels)

The Link Between Language and our View of Disability

Following on from my most successful “How to Lose Friends & Alienate People” post, I’ve decided to do another post, further discussing my ideas around disability & language.

(Disclaimer: All opinions are my own. This post will include language that’s considered ableist slurs, If you find that language upsetting, it’s probably better if you just skip this one.)

Wheelchair bound

This one reared its head again after the recent death of Stephen Hawking, it’s how he was described in most of the newspaper articles I’ve seen. And frankly, this idea that wheelchairs are binding or limiting needs to stop. Seriously, just think about what you’re saying when you say this. I’m not bound. No one is tying me into this chair and forcing me to use it against my will. When I’m using my chair, I. AM. FREE. My chair is the ONLY reason I can go to all these venues and events that I write accessibility reviews about and do all the things I do.

Disabled/differently abled/whatever identity term you use

Now, let me clarify here, I don’t have any problem with the WORDS here, It’s more the reactions to the words. Identify however you want, whether that’s person first language (person with a disability) or identity first (disabled person), and THAT word, disabled, is where the issue tends to happen. When I identify myself as disabled, and I’ve heard of this happening to other people too, sometimes people say, “you’re not disabled you’re differently abled” NO, you do not get to define who I am TO me. Disabled isn’t a bad word, identity first language is valid! #SayTheWord

R*tard

You can guess, from the fact I’ve put an asterisk in here, exactly how I feel about this word. It’s probably the worst ableist slur in my opinion, and the one that makes me flinch every single time I hear it. And for the “but it’s a medical term” people, yes, a ridiculously outdated one that isn’t actually used anymore (as far as I’m aware) so there goes that argument, ableist people!

Spaz/spastic

Here goes with what could a controversial opinion. When it comes to using this word about my disability or myself. I am COMPLETELY ok with it and WILL use it (that’s just relating to ME, I still cringe when I hear it being said to others because I know THEY might not be ok with it) The reason I’m ok with it is, for those of you who aren’t aware, the full name of my condition is  cerebral palsy spastic diplegia, and well the clue’s in the name essentially. So, I see this word as less of an insult and more an observation. And if someone DOES try to use it as an insult it’s sort of like “well you didn’t have to look far for that that one did you, it’s LITERALLY part of the name for my condition”.

Suffers from

I’m sorry, do I look like I’m suffering over here getting a joint honours degree, living independently in the capital, going to more concerts and events than I could ever have thought possible and generally living my best life? I HAVE cerebral palsy, I SUFFER FROM nothing. This kind of language, I feel, stems from the idea that disability is a bad thing or something I should be sad about, and that is soooooo not the case it’s ridiculous. I’ll live my life just like you like yours, regardless of the fact I live it on wheels

Impairment

Using this word  or hearing it used to describe my disability always feels a little odd. It just makes too much of a point of the fact there are things I can’t do as opposed to focusing on what I can do, and that’s completely the opposite of the way I’ve always approached being disabled.

Neurological Condition

This is another one that always feels odd. Even though I know cerebral palsy IS a neurological condition, I also know that people are more likely to understand that neurological means that the brain is affected, and THAT sometimes leads people to assume my intelligence is affected. That, considering my intelligence is something I’m very proud of, is an assumption that can be quite upsetting or irritating, which means I very rarely refer to cerebral palsy as the neurological condition that it is!

Carer

This is another odd one. It’s a word I often encounter at concerts or events when you buy a “disabled & carer” ticket. But the thing is, I don’t actually need much care at events like that really, particularly when I’m in my electric chair. So when friends hear me, who’s usually incredibly independent, mention a “carer” it kind of scares them, like “oh what do I have to do?” when all I’m really saying is “do you want to come to this thing with me as a friend”. And for those wondering, Personal Assistant is worse because, to me, it gives the idea that being disabled gives you some kind of privilege, and believe me, disability isn’t some kind of fancy privilege!

How are you going to…? 

This one’s sort of depends on the context of when it’s being said. If we’re going somewhere together and you want to know how to help me with certain things on the journey like getting on and off whatever form of transport, that’s fine. But if I mention going somewhere by myself and you ask this, it kind of feels like you’re questioning my capability, and that’s not cool, in these situations, how I do things is something for me to figure out.

Can’t

Ok, alright, THIS. THIS. IS. JUST. NOT A WORD. The only thing I physically cannot do is walk unaided, everything else I figure out my own way of doing. So, for all those who like to say “oh you can’t do x” stop trying to tell me what I’m capable of & what I’m not

I hope this post helps expand my the discussion around disability & language. Feel free to share your thoughts below

Stay Invincible!

Em (InvincibleWomanOnWheels)

The Small Barriers That Mean Inaccessibility as a Wheelchair User

Invincible or Phenomenal, you decide. Photo Credit to Nikki Barker, Instagram: http://bit.ly/2FwsbAS

This is an accessibility review with a difference. It’s not a review of a specific venue as such, but more of an accessibility review of Uxbridge, my local town. This is sort of the story of a trip for coffee (those who know me know I looooooooooooooove my coffee). Now, on the face of it, this doesn’t sound like a blog-worthy trip, but I really believe this shows that even the simplest of pleasures require an #InvincibleWomanOnWheels.

Path Obstructions

Nikki (editor extraordinaire and general goddess) and I hadn’t even officially made it off campus grounds when we encountered our first problem. Someone had crashed into and bent the railings on the path out of campus which made the pavements even skinnier than usual and led to single file walking and very slow driving on my part to make sure the chair didn’t get caught on anything. I understand people crashing into the railings can’t be helped, but maybe if the paths were a little wider this wouldn’t be such an issue. (hint: widen the paths!).

Then came the actual worst part of any walk down any road ever. Rubbish bags or bins on the pavement. I understand that bins need to be left somewhere for bin men to collect them, but can we leave them somewhere it doesn’t obstruct the pavement? Because otherwise, one of us has to move it, and neither of us particularly wants to, because well, touching another person’s rubbish is just kind of gross. But the alternative is me running over, and quite likely splitting, the rubbish bag, and not only is that equally as gross but it’s probably going to annoy the bin men when they have to pick up rubbish strewn across the pavement.

Drop Kerbs

Then we came to what I refer to as partial drop kerbs. The kind where part of the kerb can be considered a drop kerb and part of it really, really, REALLY cannot be considered a drop kerb. This means driving my chair at a specific angle in order to be able to drop down the kerb safely. Want to make a drop kerb? Make a COMPLETE drop kerb, or don’t make a drop kerb at all. This partial drop kerb business is unhelpful and likely causes more issues than it solves.

The amount of times I had to stop the conversation to ask or think about where the nearest drop kerb was was annoying. I don’t want to HAVE to stop a conversation part way through just to be able to find a drop kerb, but they’re that lacking that sometimes stopping the conversation is my only option. So, how about we make drop kerbs the norm for every kerb? It’ll have no impact on those who don’t NEED drop kerbs and make a big difference to those who do.

Speaking of drop kerbs, a lack of them tends to lead to me driving on the road until I can find a safe place to get back on the pavement. As you can imagine, this is super dangerous, because no matter how close I can stick to the kerb, I’ll still run the risk of facing a car and getting hit. This obviously isn’t ideal and, as I’m pretty sure I’ve mentioned in a previous blog, despite the fact my wheelchair seems road legal, I’ll always lose a battle of wheelchair vs car!

Automatic Doors

Hallelujah we finally made it into the local Starbucks, AAAAAAANNNNNND it has an automatic door. EXCEPT the door is only automated on one side (the outside to be specific) AND even the button to automatically open the door from the outside doesn’t work. So, the automatic is basically pointless. This isn’t a tick box exercise. Just having accommodations like automatic doors isn’t enough, those accommodations have to actually work and be of use to the people who need them!

Card Machines

We finally chose our coffee and snacks and headed to the till to pay. There was a card machine on an extendable cable, super helpful right? Except those cables are never long enough for wheelchair users like me, who are also short, to be able to reach. Card machines likely have to be wireless or there is no difference in my ability to use them. This seems to be another instance of companies seeing accommodations as a tick box exercise where just having accommodations like card machines on cables, is good enough rather than making sure that accommodations are useful to those who need them.

Staff

To end on a good note, the staff offering to bring our coffees to the table for us, without me having to ask them to, was a welcome surprise. Thinking about customers’ needs, such as the fact I don’t enough hands to carry a tray of goods and drive my chair at the same time, without them mentioned, is always a win in my book and happens a lot less often than it should.

I hope this post shows how even the smallest accessibility issues can turn simple pleasures into trips requiring an #invinciblewomanonwheels, although I do have to give a super shout out to the actual coffee shop staff who were always super helpful and made up for building/trip accessibility issues!

Stay Invincible!

Em (InvincibleWomanOnWheels)

The 5 Things NOT to Say (or Do) When Interacting With a Wheelchair User

Wrestling hat? Check! Coloured jeans? Check! Boots? Check! Typical Invincible Woman On Wheels fashion Photo Credit: Nikki Barker

This is a topic I’ve seen a lot of disability vloggers cover, so I thought I’d give my spin on it. This is 5 of the more irritating/misguided/eye roll inducing things people say and do, because I’m in a wheelchair, as well as 1 massive misconception about disability. Now, this is not a call out blog, I’m not going to be naming and shaming anyone. This is more of a public service announcement that if you say/do any of these things you’ll likely incur a very confused look and an eye roll from me and you’ll be the incident I laugh about with my friends over coffee

Say

“I’m so sorry”

THIS. THIS IS THE ACTUAL WORST. This usually happens when I call a venue and have to mention that I’m in a wheelchair in order to check accessibility. I’m so not mentioning my disability for a pity party. Don’t be sorry I’m disabled because I’m not. My disability has given me so many opportunities I wouldn’t otherwise have had (this blog for example) and I wouldn’t be half the person I am without it, so hearing that you’re sorry is really quite insulting.

“You’re so great for being friends with her”

WHAT?  This one’s usually said to my friends (by drunks) when we’re out at the pub or bar (and I know, drunks are drunks, but drunk people say what they’re thinking without a filter, so drunks can actually be a better guide of what they’re actually thinking) and every single time the friend in question has pulled a face that I’ll refer to as the WHAT?! Face (you all know the one) because, and here’s a revolutionary fact, my friends aren’t friends with me because of my disability (and if they are, likelihood is I don’t consider them a friend). They’re friends with me because they see the girl beyond the chair, and I’d implore anyone guilty of saying #2 to do the same.

“OH MY GOD you’re sitting”

Yes, this has actually been said to me by another human, who shall remain nameless. This was after I’d transferred out of my chair into an actual seat to sit with friends. And the entire table just kind of pulled the WHAT?! Face while I rolled my eyes so hard I literally saw the inside of my head.  I just… I was also sitting in my wheelchair before I transferred or does that not count as sitting?! I’m genuinely perplexed by this years after it was said, and sincerely hoping no one ever says this again because honestly, I just, I just can’t explain this one at all.

“I’ll heal you”

This one is usually said by random people in the street with some kind of religious healing connotation going on. I get it, if you want to believe that my disability can be healed/fixed or needs healing/fixing then you can have your beliefs, but just don’t say them TO me because a) I don’t need fixing because I’m not broken and b) I really don’t want healing, disability is the only life I’ve ever known and I’ve no idea how to live any other way, and I’m really not sure I’d want to live any other way. Likelihood is if you say this I’ll completely ignore you.

I want one! (in reference to the wheelchair)

This has to be the one that gets on my nerves the most. It tends to come from teenagers who see the wheelchair and decide that it must be “so easy” being in a wheelchair, and no, it’s really not. I’d kind of understand this one if it came from younger kids, but you’d think by the time kids are teenagers they’d understand the meaning behind their words. This wheelchair is not a fashion statement, want to take my condition too? No? then you don’t REALLY want the wheelchair. Swap your fully functional legs for my wheelchair and then maybe we’ve got a deal.

Things people do that really grind my gears:

Sing “Rollin”/something similar

This one has happened soooooooooooo many times I can’t even count, in case anyone’s wondering which song I’m talking about, it’s Rollin by Limp Bizkit (if you still don’t know what I’m talking about, search it, I refuse to have that song on my YouTube history). You see me go past in my chair, how very observant of you to notice a large motorised vehicle, there’s no need to announce that you’ve seen me (unless it’s “Hey Em”) by singing this ridiculous song like it’s going to be a revelation to me or anyone else that I’m in a wheelchair and if you do HAVE to draw attention to the fact you’ve noticed my wheels, be creative about it, I’ve heard this one sooooooooooo many times and it’s getting a little boring after so many years!

Act offended on my behalf

This happens when my friends make some kind of reference to the wheelchair or my condition (links between the chair and Transformers springs to mind back when Transformers was a big deal). I get that this sort of stuff isn’t funny for everyone but it tends to amuse me so I laugh, and then some random human I’ve never met goes “YOU CAN’T SAY THAT!!!!!!!!!!!” actually, I , the disabled person at which this joke was directed, laughed, which means I found the joke funny, and this joke has probably happened a few times. So yes, they can make that joke to me (note: TO ME). And if something’s not funny my friends know I’m more than willing to call them out for it.

Physically try to move the wheelchair

This has only happened once that I remember thankfully, but it was a situation and a half. The drunk girl in question (yaaaaaaaaaaaaaaaaaaaaaaaaaaaay drunk people) physically tried to move my ELECTRIC WHEELCHAIR WITH ME IN IT, never ever ever ever going to work, love, for 3 reasons: a) that’s like a literal tonne of electric wheelchair with 2 batteries AND a whole person in it, and you are one small woman, lifting it isn’t ever going to be an option. b) If you do try and move me and get annoyed when I don’t move, I’ll just keep positioning myself more in the way because your annoyance is amusing me, and I like to annoy people when they’re being stupid like this. And c) if you do decide to stand in front of me and purposely block my view, I’ll just rise my seat above your head! (because yes, this snazzy bit of kit I sit on goes up and down as well as backwards and forwards). If I’m sat somewhere it’s likely because it’s the only or the best place for me to see. And if I am in the way just ASK me to move, I’ll probably oblige if you’re nice about it.

Help when I say I’m ok

Now I get it, it’s human nature to want to be helpful, so if you think I’m struggling and want to help then go ahead and ask, if I want your help I’ll accept, and you can go ahead and help me out. But if you ask and my response is “no thanks, I got it”, don’t proceed to then help me, if I say I got it, I got it. I’ve done whatever it is I’m doing a dozen times with no help. It may look a weird way to do something, but I can still do it. Let me have my independence like everyone else. If I can live in London by myself for 2 and a bit years I can take food out of a supermarket freezer by myself.

Pat me on the head

This. This is the reason I’m pretty constantly wearing a hat or hood. I don’t know if it’s the combo of being in a wheelchair and being short (the joys of being 4ft 9) but this happens way too often for my liking. I am not a child or a dog, stop petting me. Like literally take your hands off my head or I will. I’m not sure how many more ways I can tell you: DO. NOT. DO. THIS

And now here comes the controversy

“YOU’RE AN INSPIRATION”

I get it, part of the reason behind this blog is for me to inspire people, parents of kids who just got a diagnosis and don’t know how they’re going deal with that. But also, I’m not inspirational or I shouldn’t be considered inspirational for just going to work, or uni, or out and about like everyone else. I shouldn’t be considered to be “doing enough by just being alive” (yes, an actual sentence that was actually said to me). I fought to have a life, so I’m determined to LIVE it, society needs to stop saying “you can’t” do things with a disability and start saying you “you can, and let’s figure out how”.

I hope this post helps you realise that you might say or do something that irritates those with a disability so that you think a little more before you speak or act.

Stay Invincible!

Em (InvincibleWomanOnWheels)