I recently alluded to the fact I had really struggled attending a music festival because of my invisible disabilities and that I would share a post about it at some point. This is that post, along with a more positive conclusion, now I have had a full response from the venue.

I have long struggled with having invisible disabilities in public spaces, as I’m sure is the case for many of us living with chronic conditions and/or various aspects of neurodivergence. Having more than one overlapping condition with invisible symptoms, the matter of going out on outings has only become more complicated for me over the years.

In some ways, I had become accustomed to having to be the one to adapt by bringing things along with me that help (earplugs, cushions etc), asking for accommodations on the spot (for instance, requesting to be sat in a quieter corner, sometimes by overplaying hearing issues, which are easier to explain, rather than trying to explain my real issues, only to be greeted by uncomprehending stares) or insisting I have access to the disability loo, even though they can see I can walk. Often, it takes willingness to stand out and it takes nerve!

However when this year’s music festival came around (its fairly close to home so no sleeping or travel challenges to negotiate and its also the kind that is largely seated), yet with me in quite a different physical state compared to last year, also because I was strongly urged to do so by my physio, I made contact with the organisers in advance, explained my struggles and asked them what arrangements they had for people with invisible disability like me (where there is no wheelchair etc to alert stewards that I need special accommodations). I explained fully why, in some cases, the very fact of my issues being invisible can make it even harder than if it was obvious.

To my relief, they quickly came back to me to let me know that there would be disabled loos in both performance areas, also a disabled area in every covered performance location (about half way back on either side) and that I would have priority access to these. When I asked how I would I gain this access, they very quickly made me my own special pass to show to the stewards. I was also told about somewhere I could leave some belongings if we had a lot of paraphernalia to carry. All of these things greatly reassured me in a week when I was feeling challenged enough to have questioned whether I should be attending at all given they would make things much more viable for me, not least because we wouldn’t have to race between venues to claim a dry place to sit, nor to find a more appropriate toilet, given one would always be waiting for me. A further enquiry regarding access to disabled parking, because my husband was increasingly concerned at the distance I would have to walk in increasingly adverse weather, received no reply to this day.

However, when we got there, on a day that was blustery, wet and almost autumnal in its much colder temperatures, my relative optimism about all these arrangements quickly fell apart. For starters, the disabled loo by the main stage didn’t exist although it clearly showed on the map in the program. The priority areas turned out to be a space 2 x 2 metres in size (as per an easy to miss white laminated A4 sheet attached to a tent pole at the side which everyone, including me, failed to spot until my husband noticed it on day two), in other words just big enough for a couple of wheelchairs or mobility scooters side by side, no extra for helpers, and with no barrier around it so absolutely no one was paying attention to the fact it was supposedly reserved for disability. The laminated sign, by the way, was worded “priority area for wheelchair users” and no inclusion of people like me so I would have been left to justify my need to anyone who decided to question my entitlement because I didn’t “seem” to be disabled.

What’s more the stewards, who were not always there at the right moments anyway, didn’t seem to recognise the pass when they saw it. The very first one that I approached peered at it, shook their head looking baffled when I asked where I find the priority area that was waiting for me and said “there’s isn’t one really” before sending us to the very back of the covered area where we were exposed to wind and slanting rain all evening not to mention behind a raised platform and a sea of better able bodies including those who decided to get up and dance. We had arrived there at least 45 mins before the performance was due to start (there isn’t that much time between most performances) but everyone had clearly parked their chairs well in advance of the main event and we were in probably the worst spot from all aspects. It was a very cold, gusty and damp experience and my joint pain was so severe when I got home, very late, that it took well over an hour to be able to get myself remotely comfortable enough to go to bed, leaving me exhausted the next day.

The problem of people claiming their spot very early in the day, by leaving deckchairs in situ, was an issue that only got worse because we were now having to arrive later and later each day due to how much I was struggling with the exertion and worsened symptoms from the weather etc. I was finding myself so crashed-out in the mornings that I really needed to rest-up for as long as possible before we set off again, so any plans to arrive early enough to catch up-and-coming artists or claim a good spot for the main event quickly disappeared beneath my need to delay going until more like 4 o clock in the afternoon, when the music actually started at around 11; in other words, we were hardly making use of our tickets as we would have done if seating had been guaranteed for me, allowing us to relax (also because of knock-on effect of being exposed unnecessarily to the elements).

There was one performance area, in fact the one we enjoyed the most last year because of the sheer variety of talent put on there, that we didn’t manage to get into once because of chairs so tightly packed and spewing out of the edges of the cover, with the disabled area completely absorbed by able bodied people long before we got there (we never saw any of the numerous wheelchair or mobility scooter using folk in there either). To take part, I would have had to sit outside and been exposed to the elements, including bursts of quite intense unshaded sun, which is as intolerable to me as cold, wind and wet.

When we did find a viable spot in the main tent (by being even earlier than the early people before the evening performances), it was almost guaranteed that people would arrive at the very last moment and, without apology, create a new row for themselves where there wasn’t space for one, right in front of our legs so that I had no room for movement of painful hypertonic limbs that need frequent stretching out and moving about and would be so tightly hemmed in that there was no way to get back out again, to the loo, without creating an almighty scene of pushing through people and chairs that would have to be moved during a performance to make way for me. With no chance to be discrete about any needs that arose, I was in a state of tension a lot of the time.

The stress of all this, including a woman who plonked her husband’s deckchair so close to mine (without so much as looking at me!) that the arms of his seat went right over the top of mine, leaving me no arm rest at all (they had plenty of room on the other side but were after a better view), and the two women who put their chairs so close to ours while we were off getting drinks, that they must have assumed we had no legs, began to mount as the festival went on.

By the fourth day, my stamina had disappeared. I was so exhausted from getting home feeling so over stimulated, not so much by the music (which was as excellent as ever: one of the reasons I try to get to live music is that it gives me a rare endorphin boost) as by stress and people’s proximity, the sheer rudeness and lack of consideration even if I wore my badge on display, the lack of even an apology or eye contact as my space was invaded like I wasn’t even there (I think it was fairly obvious I was someone that struggled due to extra clothing, cushions, supports and blankets and my husband checking I was OK) and the constant need to try and fend for myself against circumstances like long queues for the normal loos, which I then struggled with because of lack of manoeuvre space as my body stiffened up and became more restricted, had all been too much for me, taking the joy out of something that we expected to be the highlight of the summer. Many of the artists we’d hoped to see that final day were in the smaller performance area and, unless we claimed a spot at the front before the first one started mid-morning, which was too early for me to hope to get back to the festival in my current state, there was no hope of getting in there as people would stay put and there was heavy rain predicted. So we didn’t bother going, a decision that had me sat on a fence of should-we-shouldn’t-we until the very last moment then full of sadness and regret for the rest of the day.

The matter of parking never got resolved but there were only about 4 disabled spots and all taken before we got there. The parking field was huge and fairly rugged to walk across, with no cover nearby so, whenever we were ushered to the far side, we ignored and dived off into one of the first empty spots we could see (where somebody had presumably left) and even those would involve a long wet walk, not just for me but my husband having to go back and forth more often than most people to fetch the various paraphernalia that I needed throughout the day, more layers of clothes, blankets and food amongst them. We investigated the area where we had been invited to leave belongings for ease of access but it was at the furthest edge of the festival and therefore an even longer distance to walk than back to the car! I risked “festival food” a couple of times, rather than bring all my own, to make the to-and-fro easier for my husband during the day, but with adverse effects that messed up my digestion for numerous days afterwards. I don’t have a blue badge, because I can walk, but I don’t usually have to walk over a farmer’s field nor do we usually have chairs and a day’s worth of disability survival kit to carry (to be honest, my husband was having to carry almost everything himself) and a touch of better planning when it came to parking and/or storing belongings would have been really welcome.

I hate how this all sounds like one enormous grouch as I am not a grouchy person by nature and I really love the music and general vibe of the festival in question. It was the best we had ever been to, last year when I was mobile and in one of my better phases. In fact, one of the things that really struck us, from the very first time we went to it, was that it has such a good atmosphere and spirit and how most people there are pretty good natured and friendly. However, this year I got to see a slightly different side of human interactions, perhaps because I was more needy than before, including what is so often “just” a simple lack of thought given to people like me and others with invisible challenges. What I experienced, as a sort of underbelly of the previous year, was similar to all the comments I just read in the ME/CFS group I’m in on Facebook, this morning, relating to a woman sharing how she had finally dared to borrow a wheelchair for the first time this year to attend a garden festival that she always goes to, hoping it would make it more viable for her and enable her to save some of her energy thus have a better experience. Believe me, the thought of borrowing a wheelchair came up for me too, this time around, such is my struggle with being upright and on my feet for long and my husband was getting quite keen on the idea for whole days out like this but I am simply not ready, yet, to put myself through the grieving process that will inevitably come with the realisation that I am sometimes “that bad” these days so I decided not to.

Anyway, the woman in the FB post finally did it and was full of hope that it would allow her to have a better time at the garden show this year than she did the previous time but she actually had a horrible time, found she couldn’t get anywhere as people would jump in front of her chair as if she wasn’t there and came home in floods of tears. Dozens of other members then shared similar experiences, about how people just didn’t seem to see them once they were in a wheelchair, like it was some sort of invisibility cloak; instead they just seemed to get in their way even more or park their dogs right in the space ahead of them, or they would experience glares and even rude comments. So it seems that even a wheelchair isn’t the magic wand to dissolving all these issues away and the general (lack of appropriate) response to invisible conditions is just the thin edge of the wedge!

So, anyway, I wrote up an email to the organisers and shared a briefer version but much as I have above, with a list of suggestions for next year, such as allocating a person to make sure accommodations are actioned and perhaps using taped barriers, like they have for controlling queues, to cordon off the priority area for disabled people until such time as they have established, at the start of the performance, that there are no more disabled people coming to claim it and then they can open up any spare room to able bodied people but with the proviso that disabled folk aren’t cramped and crowded by their chairs and are always left good access in and out.

On that topic, I noticed another woman sat near to me on two occasions who may well have been looking for the priority area as she seemed to be looking for some sort of clue where to go and who I suspect may have had sensory processing challenges and anxiety (I recognised the all-too-relatable signs and behaviours). She became so distressed, presumably by overcrowding caused by late arrivers cramming into our space just before the headline performance one evening that, after a period of fidgeting and withdrawing further and further inside her hood, she finally packed up her things and left, looking rather upset (she had been closely hemmed-in on all sides by then and had to make a scuffle to get out again, which she seemed desperate to do). This exactly illustrates why there needs to be a protected area for people who have issues with proximity and freedom of access.

It’s time there was more advocacy for sensory disabilities and recognition that being disabled is not all about whether you can or can’t stand or walk. The requirement for extra space, to not get too boxed-in, to have ample leg and arm room and space for extra paraphernalia, to have other people observe a polite distance and to be placed away from speakers, amplifiers, flashing signage, lighting clusters and so on is a priority in a lot of cases relating to more than one health issue. Also, in many cases, to be positioned away from the elements since weather extremes can make many symptoms much worse (so putting all of the disabled areas right at the edge of the general seating area near the edge of any protective cover isn’t quite right when it is an outside site as people like me would still get the brunt of it).

At indoor venues, I have to pretty much insist on being placed at the end of a row with either no one in front of me or no one behind (either front or back row will do) so that I don’t feel hemmed in by bodies on all sides because it makes for a much better, far less overstimulating, anxiety inducing and exhausting experience for me (also improved access when needed in a hurry). I was prepared to be more flexible given this was a festival but some of the overcrowding and “creative” seating arrangements, leaving other people, who were already settled, and their dogs, no room to manoeuvre, was utterly abhorrent on this occasion and with no stewards seeming to be interested or prepared to intervene. Much more staff training on these things would be a boon.

As for the matter of the missing disabled toilet, urgency forced me to walk a fairly long distance to the only other one, at the far end of the festival site, on more than one occasion and frequency of need made this aspect utterly exhausting for me as it involved a lot of waking that could have been avoided. I must have done most of my steps for the day making that particular journey and became so tired and increasingly disabled each day as a result. It wasn’t just the matter of struggling with space in the normal loos, though with all the extra layers necessary to protect my joints from cold it was a fairly big issue as manoeuvring became really challenging, but the fact of the disabled loo being the only one that was ever free in a hurry. Incidentally, I wasn’t the only one to suffer because of the missing loo and the experience of watching an older man trying to lift his extremely disabled wife out of a standard portaloo back into her mobility scooter, without the ability to fit in the loo with her to get a proper grip around her torso, was painful to behold!

So, yes, I frequently struggled to walk the probably 5x extra distance to the one disabled loo because it was better for me than the standard ones and then had to brazenly claim it whilst other people were queueing for the normal ones. I certainly caught some raised-eyebrow glances off people when I walked out of that loo a couple of times, even though I kept my disabled pass on its sunflower lanyard (I also had my sunflower invisible disability card on the reverse) on clear visible display at those times. I suspect most people very quickly judge other people with a quick glance and, mostly, their assumptions more so than they ever bother reading such labelling hung around people’s necks and there are still such a lot of people who don’t understand about invisible disability or recognise the sunflower symbol…I really wish some funding would be put into educating them on primetime tv and the like. No wonder I wasn’t prepared to walk up and risk asking anyone to make space for me in the so-called priority area…

So a couple of days ago, my emailed response from the organisers came back and, I have to admit, I was heartened by their attitude as it could have gone either way. They took my email seriously without becoming defensive, admitted their failings and lack of forethought on various issues, thanked me profusely for taking the time and providing such detail of my struggles and have now discussed it all in detail at a meeting last week, as a result of which they are now going to appoint a new member of staff to oversee disability arrangements in future. They are looking to this person, what sounds like an energetic person that they already have in their sights, to come up with some creative solutions for future years and liaise with ticket holders according to their needs. I suspect they will take on one of my suggestions about doing a daily headcount of disabled people according to information collected at point of ticket sale and/or inviting ticket holders to make contact with any disability needs via email (I strongly suspect I was the only person with invisible disability to do so this year as they created the pass just for me and I saw no one else wearing one). If they make known to their customers that they are open to listening, I feel sure more will come forwards but its also down to people themselves to dare to speak out and ask for what they need.

In fact, this whole experience goes to show the importance of speaking up for your needs, of feeding back when things don’t work out and of urging venues and organisers to try harder in the future. Some, if not all, will listen and in time things should get better. It will also take a lot more education of the general public for things to really improve, which is something I hope we are all prepared to work towards, as we each do whenever we stand up for our challenges and dare to speak out and educate people about what isn’t immediately obvious about our disability experience, utterly life-encroaching though it may be to us. We have every right to be able to expect to take part in, and enjoy, experiences that able bodied people are able to take for granted and, if it takes a few tweaks and accommodations to make that happen, then we should be pushing for those until we get them!

I’m not sure whether my own learning curve has now put me off attending the full 4-day experience of the festival next year; it may be that we only set out to do half the festival on alternating days, to factor in some recovery time and allow me to pace. It will all depend on how much stability I manage to regain by this time next year as I have been experiencing quite a lot of worsening health issues this year, for reasons outlined in other posts.

Whatever we decide, I’m hopeful that the festival will have better arrangements in place from now on (they admitted they hadn’t given some of these things any thought until I contacted them about my needs and that gave them insufficient time to plan ahead in time for this year). So I intend to contact them well in advance next time, to check these things out and iron out any kinks…and will hopefully be able, this time around, to talk to a designated member of staff who can afford to give full attention to my needs instead of trying to fit them in around putting on a festival.

Inch by inch, we hopefully make things that little bit better but it takes communication and guts. It was very hard for me to get vocal about all this in the days right after the event as I was in the thick of a very severe ME/CFS crash and these issues had made me feel quite vulnerable and emotional (as I’ve heard other people on the forums share about times when their invisibility makes them feel like they have fallen down the cracks). Being made to feel unseen and unheard, uncared for, excluded, unimportant, unwanted…all of these things…can give rise to a very particular and entirely valid version of rejection sensitivity when it keeps on happening. It begins to gnaw away at you and undermine everything about you, given time.

In my case, I just had to get it off my chest as soon as possible in order to be able to feel a little bit better and, thankfully, a very positive response has helped to repair some of the damage. Not all responses are going to be so positive (be prepared for that) and it’s hard to take them when not feeling well much of the time, so it’s a case of balancing the need to confront with how we are feeling at that moment. I would still say that it’s worth sending polite but firm feedback to organisers because, even if only a short email or comment on a feedback form, how else do they get to know how much we are struggling…we can’t always expect them to think into our shoes (I don’t think most people are capable of imagining what it’s like to be in our shoes until a similar thing happens to them). We have to do what little we can to make our invisibility more visible in all aspects of life including this one until, little by little, people start to see us more clearly.