I had planned to write a blog piece about the great experience I had with accessibility support at my recent team lunch out, however as only a few days later I had just the opposite, a terrible experience which could have easily put me off trying to get out more on my own, I thought I’d add a little twist and compare the two days out, the differences well thought out accessible and inclusive approaches can make to individuals and how both left me, someone with Myalgic Encephalomyelitis (ME) feeling.

First up, the good.

Where: St James Quarter, Edinburgh

wheelchair, beer, sunflower lanyard and sunglasses for bright lights….everything I could need!

From beginning to end, the team at Guest Mobility Services were friendly, informed, thoughtful, compassionate and proactively helpful. That coupled with great resources meant that everything went smoothly and any potential issues I may not have even thought about were addressed before they even arose. I called in the day before I was visiting the centre, got straight through to a human being who let me know what was available and offered to book everything there and then for me, even giving me advice on which entry to tell my taxi driver to take and how much time to allow for everything. When I arrived the next day, he was there, greeting me by name and getting my wheelchair set up for me. Showing me how to fold it and set it up should I want to put it aside while I was eating. I had four hours and could take it anywhere within the centre. He let me know to just come back to them when I was finished and they’d organise a taxi to pick me up from their door rather than wait on the street. They checked where I was meeting friends and even helped me get there. They talked about how they wished they were more visible in the centre and that more people knew about their services, how it was important to give people dignity and make sure everyone could enjoy a day out at the centre. They even offered me a cuppa when they realised it would be a few minutes before my friends arrived! Also the chairs were great quality and very comfortable.

All in all I felt very secure and confident as I set out for the day and St James is now on a list of places I feel very relaxed in saying yes, “I can do that”.

Now to the, let’s say “needs some improvement”

Where: not here to name and shame but let’s say, City Centre Edinburgh, ticketed venue with bar.

When I arrived I was shown the stairs to the bar. My health condition falls under the heading of “invisible illnesses” or “hidden disability” so it wasn’t obvious I may find stairs difficult. I explained and was immediately pointed towards the lift and they let me know that when I was ready to move on to the event itself, just to head back to the lift as the main route would involve more stairs from the bar. So far so good.

Once ready to leave the bar and head to the event, I now had my Sunflower Lanyard on so even though I may appear fully able-bodied this stated that I have ME.

Me trying to add some visibity to my invisible illness

It turned out that to use the lift to get to the event we needed a member of staff and their access key.

It didn’t take long before my legs started to hurt standing so I decided as everyone else was just waiting I’d go let a member of staff know there were people waiting for the access route. I then promptly found a seat to wait in. Note this was a seat for staff but needs must when it’s that or the floor!

Our guide arrived and we headed into the lift. Unfortunately this is when things turned from a little inconvenient to properly problematic.

There were probably around 10 of us including the guide. One person said they knew the way and to follow them. I was second and the guide was at the back of the group.

We started walking, turned a corner and ahead was a loooong corridor. I heard others comment that this route was probably even longer than the stairs. There had been no mention of a long walk or if anyone might have any issues with this. (Note: it turned out they even had wheelchairs but nothing was offered and I only spotted them on the way back)

Part way along the corridor I began to really struggle. There was a random chair against the wall at one point and after pushing on I realised, nope, that chair was needed and I returned to collapse on it. I was in pain, out of breath, unable to speak and clearly not coping.

And then…….Every. Single. Person. Walked. By.

Yes, that included the guide. No questions, no reassurances they’d return, nothing.

And so, that’s how I found myself in pain, alone in a corridor, not knowing if anyone was coming back for me, if I was about to be locked in where I sat, if I could get myself to where I was meant to be going, if at the end of this corridor there were more corridors and I’d be lost in this basement with no phone signal to call anyone. I felt anxious, vulnerable, and frightened.

After resting a little I got myself back up and walked on. I was in pain but really wanted to get to where everyone else was so I would feel safer.

Thankfully when I turned the corner I could see the final door. By the time I got to there though I was in tears and hanging on to the wall.

My friend (there hadn’t been room in the lift for her) spotted me immediately and came to help.

Everyone could see me and I was very aware all eyes were on the hobbling women crying at the front.

Only then did the guide come over and ask if I was okay or could she help. At that point it was too late for me, I just wanted for everyone to stop staring and to rest my body on the seat till the pain stopped.

I haven’t yet contacted the second company, but I will. Not to make this a complaint so much as share some helpful feedback. Why? Well because they do have a system in place, and in hindsight I think there have been so many regulars with a similar type of need that they have become used to one way of doing accessibility and I fell through the gaps. So I HOPE that by sharing my experience and listening to my suggestions the process can be improved upon and no-one else will end up alone, in tears feeling invisible.