"I just give up and decide not to go if it all gets too hard."

Your experiences and opinions matter to us. That’s why we run the Access Survey every year – we want to share your stories and make your voices heard.

This year’s survey revealed the burden of the Accessibility Time Tax - we spoke to Sharon, Access Survey participant and Euan Guide’s supporter. Sharon explains the impact of the Time Tax.

“I live in a Cambridgeshire village with my husband, and my daughter and her husband are in the next village.

“I recently retired from the Civil Service due to ill health after 24 years of service. I have been based across the UK, including Scotland and Northern Ireland, as well as in Germany, Cyprus, and the Falkland Islands. My job has taken me to Russia, France, Belgium, Nepal, and Brunei, as well as to the Welsh Assembly, the Scottish Parliament, the House of Commons, No. 10, Buckingham Palace, and UK Embassies overseas. I had a fantastic career, which ranged from attending ministerial debates in the House of Commons to travelling to Moscow, Russia, to arrange joint commemoration events for the 100-year centenary of the end of the First World War.

“I mention this because I was completely at ease navigating complex environments, travelling internationally, and managing demanding logistics professionally. If someone with that background finds the accessibility landscape exhausting and confusing, it speaks to how genuinely difficult the system is - this is not someone who struggles with planning or organisation.

“I’m a long-term MS sufferer who developed Mixed Anxiety and Depressive Disorder in 2023 due to issues at work. Prior to this, I was fully ambulant, and no one would have known I had a disability. The stress and anxiety caused by issues at work led to a severe deterioration of my MS, resulting in my becoming a wheelchair user.

“Given my level of independence and mobility, it took me a long time to get used to. I found it hard to ask for help, and I have found I prefer to do as much as I can online. The transition to becoming a wheelchair user was not gradual - it was a sudden and significant change to my identity and independence. I went from someone who travelled the world professionally to someone who must now carefully research whether a pub has a step at the entrance.

“The psychological impact of that shift cannot be overstated, and every access failure I encounter is a reminder of what I have lost. This makes poor accessibility not just an inconvenience, but something that directly affects my mental health and the management of my condition.

“My experience is that some organisations are fantastic and cannot do enough for you, while others are patchy and it feels like they are doing you a favour.

“In my experience, booking theatre tickets via ATG, LW Theatres, etc. is simple, and the staff are so helpful when you attend their events. Once you have registered your disability and needs with them, it is easy to book wheelchair tickets with a companion without having to ring, email or chase details. In fact, if there is anything they are unsure about, I have found they will ring me to confirm before the event.

“I have also found TfL a particularly good provider of accessibility. The staff are helpful, and the website/apps make it easy to see which stations are accessible to help with travel plans. I have changed how I would travel to London. Prior to becoming a wheelchair user, I would have routinely got the train from Huntingdon to London Blackfriars to get to Whitehall. However, we will now drive to an APCOA car park, such as Central Finchley TfL, where I can park for free in a Blue Badge space and take the tube into central London, usually Tottenham Court Road or London Blackfriars, depending on where I am travelling to. This reduces the number of transfers, so anxiety!

“I highlight these positive examples not to suggest the system works, but to demonstrate that good accessibility is entirely achievable when organisations choose to prioritise it.

“The contrast between providers who get it right and those who do not is stark, and it proves that poor accessibility is a choice, not an inevitability. When it works well, it genuinely changes lives - I can still visit London, still maintain some of my former independence, and still participate in cultural and social life. That matters enormously to my wellbeing.

“The number of times you have to register with different websites to access disabled facilities. You have already jumped through the hoops to be declared disabled and to get your PIP, etc. There must be an easier way of linking your requirements. I have an Access Card, but you still have to register separately with each provider.

“One of my biggest frustrations is locations that state they are accessible but aren't. I went to a pub for dinner, which we had checked was accessible. On arrival, I had to enter through a different entrance with two steps, so family members had to lift me down them. If I wanted to go to the toilet, I had to go back outside, then through another door to get to the accessible toilet. This is not accessible.

“I went to a concert at Emirates, where there was only one lift down to the raised viewing platform, which was being used by staff, VIPs, and disabled staff. While I don't expect a dedicated lift, this could have been handled better by having staff available to support disabled persons. It took over an hour from arrival at Emirates to get to my place on the viewing platform.

“Another example is the O2 Arena. They have very limited wheelchair seats given the venue's size. They offer ambulant seats, which, when you arrive, have no handrails and are offered to all patrons, not just disabled people. The only warning on the website is that they are not suitable for those with a fear of heights. Having difficulty with balance, fatigue, and leg weakness is not a fear of heights, but this seating is not suitable.

“I would also add that when access failures happen, there is rarely any accountability or follow-up. Complaints are met with generic apologies, and nothing changes.

Under the Equality Act 2010, organisations have a legal duty to make reasonable adjustments for disabled people - but in practice, enforcement is left entirely to the individual, which requires energy, time, and resilience that many disabled people simply do not have. The burden of fighting for basic legal rights falls on the very people least able to fight.

“I get anxious and weepy, which I then cover by becoming angry. It detracts from the enjoyment of the event.

“Recently, at the O2 Arena, in an ambulant seat, I spent the entire concert looking at the back of someone's back because when they stood up, I couldn't, so I had no view.

“I can then suffer from chronic migraines the next day due to the stress and anxiety caused. It is also worth noting the impact on my husband and family. They worry about me, assist with planning, and are present when things go wrong. My husband has had to physically lift me at venues that claimed to be accessible. No one should have to do that. Access failures do not just affect the disabled person, they affect everyone around them and they place an unfair physical and emotional burden on unpaid carers and family members.

“There is also a financial cost: tickets, travel, parking, and hotel costs can be wasted when a venue is not as advertised, and there is no straightforward mechanism for reimbursement.

“Depending on where I am going, I can spend nearly a day planning a trip to a new place. It includes everything from parking and flights/trains to hotels and getting around. This information appears in different places on different websites, or it is missing entirely.

“For example, if you look at Expedia, the Accessibility section on the website can be empty, and you are informed to contact the location. This means it takes more time, and until you confirm, you cannot book, which could leave you missing out on time-sensitive deals.

“What people don't realise is that this planning is not a single, linear process. It is a series of research layers, each dependent on the last. I cannot book a hotel until I know it has an accessible room with the right specifications. I cannot confirm the hotel until I know the nearest accessible tube station. I cannot plan the tube journey until I know whether the lifts are working - and TfL, to their credit, do publish lift status updates, but a lift that is working today may not be working on the day I travel. So I have to build contingency plans into contingency plans. Every single outing involves this level of detail, and it never gets easier because venues change, websites update, and what was accessible last time may not be accessible next time.

“I have also found that accessibility information, when it exists, is often vague, outdated, or simply inaccurate. A website may say 'accessible toilet available' without specifying whether it requires a RADAR key, whether it is large enough for a powered wheelchair, or whether it is actually unlocked and usable on the day. 'Step-free access' can mean anything from a fully ramped entrance to a single step that someone has decided doesn't count. There is no standardised definition, no standardised format, and no accountability when the information turns out to be wrong.

“For a straightforward evening out - dinner and a show, something my husband and I used to be able to arrange in an hour - I now need to research the restaurant, the theatre, the parking or transport, the route between each location, the accessible toilets at each venue, and what to do if any part of that plan fails on the night.

That is, before I have packed my med bag, printed my confirmations, charged my wheelchair, and left the extra hour or two early to allow for things not going as planned. What was once a spontaneous pleasure has become a project.

“It is tiring, frustrating, and sometimes I just give up and decide not to go if it all gets too hard. But I want to be honest about what that phrase - 'give up and decide not to go' - actually costs me, because it is easy to say and hard to convey. Every time I make that decision, I am not just missing an event. I am losing something. A concert I was looking forward to. A meal out with my daughter. A trip to a museum or a gallery. These are not luxuries - they are the things that give life quality and meaning, particularly for someone who has had to give up a career they loved.

“Before I became a wheelchair user, I was someone who did things. I travelled. I attended events. I was independent and active. Every time the Accessibility Time Tax becomes too much, and I stay home instead, it chips away at that sense of self. It reinforces a feeling that the world is not designed for me, that I am an afterthought, that my participation is conditional on other people's goodwill rather than a right.

“There is also a compounding effect that I don't think is widely understood. The more times I have a bad experience - the step that wasn't mentioned, the lift that wasn't working, the seat with no view - the higher my anxiety becomes before the next outing. I now approach every new venue with apprehension rather than anticipation, because experience has taught me that things may not be as promised. That anxiety itself takes a toll. It affects my sleep before an event, my ability to enjoy it even when things go well, and my recovery afterwards.

“The Time Tax is not just the hours spent planning. It is the emotional labour that surrounds every single outing, before, during, and after.

“I am also acutely aware that I am better placed than many to navigate this system. I am IT-literate, comfortable completing complex forms and online processes, and have spent 24 years professionally managing international logistics. If I find this exhausting and often defeating, I constantly think about those who do not have my background or skills. Someone who struggles with technology, who finds bureaucratic processes confusing or intimidating, who does not know which questions to ask or where to look - they are not just finding it harder. In many cases, they are being blocked entirely.

“The sheer number of hoops means that the adjustments and facilities that exist - and that people are legally entitled to - simply do not reach the people who need them most. That is not an accessibility system. That is an exclusion system with better branding."

85% of Access Survey respondents said clear and accurate disabled access information would reduce the extra time tax - be part of the solution by sharing a disabled access review or listing your venue or business for free.