Access Needs in an Inaccessible World

When I became disabled, one of the things that I struggled the most with was just how much my life changed, practically overnight. 

It wasn't just that I was adapting to no longer being a healthy, able-bodied person, but I was also suddenly transitioning from being able to do so much, so easily, to having a mountain of access needs that had to be fulfilled in order for me to do anything. 

Access needs are things that are always mentioned in passing when the conversation turns to disability, but never really discussed in full. Access needs look different for each individual disabled person, but they can include things like wheelchair access - ramps, elevators, stair lifts, accessible parking, and wider hallways. They can also include accommodations for those with sensory needs, such as loop systems (a sound system that works by sending audio directly into a user’s hearing aid or cochlear implant in order to reduce background noise and make speech and music clearer easier to understand), captioning, sign language interpreters, screen readers, and voice-controlled devices. There are so many different types of access needs. 

For me, the biggest kicker is the amount of time, effort, and energy that goes into planning each outing. I have to research every single venue that I attend to make sure that they're wheelchair accessible, to find out if places have captions or a loop system, to see if they offer carer tickets because I can no longer really go out on my own.

I spend more time anticipating the event, contacting venues or accessibility teams, reviewing websites and scouring accessibility terms and conditions than I do actually enjoying the event itself. 

This isn't something that I should have to do, but the vast majority of the time I have no choice or say in the matter because, if I go into things without taking the time to prepare beforehand, it could so very easily come at the expense of our health, our safety, or even our lives. This, of course, makes going out and doing things incredibly difficult and very stressful, but disabled people still deserve to be able to do these things. 

So, what exactly is it like to be disabled and to do things that even able-bodied people find exciting and out of the box? Things like going out on dates, going out with friends, going to concerts, going on holidays, or going to see a show at the theatre. How does being disabled change what we do and how we’re able to enjoy those special experiences? 

Of course, the experience differs for each disabled person - we all have different wants, needs, and expectations when it comes to what we do in the outside world, after all - but, in my experience, it can be summed up in four words: Hard. Exhausting. Aggravating. Exciting. 

One thing that I’ve learnt as a disabled person, as someone who went from all to nothing pretty much overnight, is to never take any experience for granted — be it good or bad. It's taken a lot of time and a lot of patience, but I’ve finally learnt how to take the good out of my experiences, no matter how stressful the before, during, or after may be. 

For each type of outing, I always require different things. There's no one singular set of access needs that fits globally for me. It's all very experimental, in a lot of ways. 

The dating scene is something I’m new to as a disabled person. Up until this year, all my experiences of being in relationships and going on dates have been virtual. This year that changed for me. 

I think the biggest thing that I found helpful was being completely honest about my access needs with the person that I’m going on a date with, and recognising that it is my own responsibility to research what places are suitable to the needs that I have, especially if you're going on a date with someone that is able-bodied or doesn't share the same access needs as you. 

Going out with friends works similarly to going out on dates for me. I know that I need to take responsibility for my access needs, but I also recognise that I need to be able to entrust my safety, health, and wellbeing to the people around me. I’m incredibly lucky in so many ways that I’m surrounded by people with whom I can do exactly that. 

There are two instances in particular where I was really able to see just how differently I am able to live and enjoy life, how differently I get to experience things as a disabled person to that of my able-bodied friends. Those two instances were at a local cafe, and the other took place in London. 

My local cafe claimed to be accessible. It had a ramp, which meant that I was made to feel as though it would be safe to use my wheelchair inside…except it wasn't exactly safe, per se. The hallways and doorways were so narrow that my chair struggled to fit through them, and the ramp was too large, too raised, and too unsteady. When I went to leave, my wheelchair tipped over and I ended up on the floor. 

While in London, the biggest inaccessibility that I hadn't even thought to consider amidst the excitement of being in London and meeting a group of my close friends for the first time was the inaccessibility of the streets themselves — the roads and pavements were so unsteady. There was also a dip in the curb that I was able to get down, but the other side of the curb had no dip in order for me to get back up. I am an ambulatory wheelchair user (meaning that I can walk a bit but not much) and I had to stand to move my wheelchair onto the other side of the curb. 

I was lucky that I was with people that I trusted enough to help me through those instances, but not all disabled people are as lucky or feel comfortable enough to do that. 

On the other side of the dating experience coin, something I’ve not done in a very long time is go on holiday. I can count on one hand the number of holiday experiences I’ve had since becoming disabled, and they are all from when I was a lot younger (and, in certain ways, a lot healthier and more able, too). But things that I remember being important were making sure that any activities that we did during the day were accessible, wheelchair and otherwise, that I still made time to rest and pace myself, and that any restaurants we went to were able to cater to my dietary requirements. 

My experiences with accessibility and access needs in theatre and at concerts are similar in a lot of ways. The things that I need are pretty much the same, fairly simple, yet often very difficult to actually access.  As a wheelchair user, I need wheelchair-accessible seating. Concert venues seem to be a lot more capable of offering that than theatre venues do. The last time I went to the theatre to see a musical, I was expected to not only be able to but also be comfortable with, moving from my wheelchair seat to one of the seats already provided within the venue.

I also require a carer (or companion) ticket due to not being able to be entirely independent — these often come at a reduced rate or are sometimes even completely free. That's definitely a huge help when going to events like these, but it comes with its own set of problems. 

I remember going to a concert last year and emailing to request disabled access seating and a carer ticket in the same way that I have done dozens upon dozens of times before, only to be told that it wasn't possible because the concert was sold out. This was weeks, if not months, prior to the concert. In the end, I managed to get in contact with the artist’s manager and eventually, the artist herself reached out to me to remedy the situation. It was incredibly stressful, and it shouldn't have been. It didn't have to be. 

While in all of these experiences, I was able to still enjoy myself, to have fun, to create good, solid memories that I will forever love and look back on with a fond smile, it shouldn't be this difficult and exhausting, having to jump through hoop after hoop to be able to go to these things safely. 

Knowing what is right for me, and what I need, helps exponentially in nerve-wracking, anxiety-inducing, and unfamiliar environments. 

Still, accessibility needs to be easier to actually access. Explaining my disabilities in detail to people who don't truly understand can, at times, feel dehumanising. Disabled people shouldn't have to go to such lengths in order to be able to live life with a shred of normalcy. It needs to be easier. We deserve for it to not just be access, but ease of access. 

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Written by Phoebe Jenkins