"The Time Tax is, to most, an invisible thing that doesn't exist, but to me it's a significant burden."

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.

Our latest survey revealed the burden of the Accessibility Time Tax - we spoke to John, Access Survey participant and Euan Guide’s supporter. John explains how frustrating, time-consuming, and draining the Time Tax is.

“I am 63 years young, married to Claire, my wife, best friend and fantastic mother to our two children, daughter-in-law, and granddaughter, for 33 years and nine months.

“After leaving school, I joined a local engineering company as an apprentice turbine and electro power gear technician. Unfortunately, this was in 1978 and during the winter of discontent. The company was bought out by an American company, who asset-stripped the company, which left me as a 17-year-old without a job.

“In October 1979, I joined the Royal Air Force as an aircraft electrician for three years to gain some experience and further qualifications. I travelled extensively during my service in places as far apart as the Arctic Circle, British Honduras, North America, the Middle East, and Europe. I left the Royal Air Force in April 2023.

“On leaving the Royal Air Force, I took up a position within the Civil Service, working within the Courts system initially. I worked in several areas for 11 years before moving to a role in the Foreign Office, working extensively within the Middle East, primarily in Bahrain, but also Oman, Jordan and Yemen. I returned to the Government property group in 2016 as a Project Manager, managing building refurbishment and new builds before specialising in secure IT infrastructure projects. I was medically retired in September 2021 due to the worsening of several medical conditions.

“On retirement, we moved in December 2021 from Norfolk to Lincoln for many reasons, but primarily so we were closer to our children, and we could afford a bungalow which we have adapted to meet my future needs.

“I play indoor bowling from a wheelchair at the Lincoln Indoor Bowls Centre. I am a common sight at several local country parks in my manual off-road wheelchair with our dog Loki. Since retirement, I have taught myself how to wood carve. I have always enjoyed working with my hands and taking things apart to see how they work.

“Interesting fact: when I was 10, I received a Seiko auto wind watch, which I then proceeded to dismantle, much to the horror of my parents - but I rebuilt it, and it is still running 53 years later and keeping accurate time.

“I have Spinal Stenosis, Scoliosis and degenerative spinal facet joints. I was diagnosed as having Parkinson’s Disease at 11.22am on 12 December 2016. I have suffered with Chronic Muscular skeletal pain for 25-plus years. I have REM sleep behaviour disorder. I have osteoarthritis in most major joints.

“I have very mixed experiences of disabled access, from absolutely horrific to excellent. What I have found out is that organisations / individuals are very willing at times to make adjustments they think are needed, but without asking those that need it.

“Also, far too often accessible bathrooms are unsuitable, used as storage, or used by those who don't need them.

“And the abuse of disabled assistance… for example, the number who need assistance through the airport but then on arrival are amongst the first up on their feet to get off, especially if they know there is going to be a delay in disembarking for those requiring assistance.

“I’m frustrated by badly designed access and turning up at venues that are supposed to be accessible, but then I find they are absolutely not, and the lack of enforcement of accessible spaces, lack of consideration for others, and this works both ways. Parking on dropped kerbs, being blocked by mobility scooters (happens regularly at my GP surgery), abuse of Blue Badge parking, lack of ability for sensible conversations on access… where do I start and where do I end!

“In the last two years, I believe a lack of accessibility or poor access to accessible venues and facilities has gotten worse.

“Education and raising awareness are lacking. I don’t expect to be just forgotten about because I have a disability, however, I do expect to be treated as an individual and to be given the opportunity, where it is practical and safe, to enjoy the same experience and facilities as those without disabilities.

“The Accessibility Time Tax can all depend on what it is I am doing or where I am going. For example, I have been using one particular travel agent for the last 18 years to arrange my holidays as she understands how my needs have changed and what I do actually need, and what is a nice-to-have.

“A lot of research I can do online, but I do like to ask others who have been to the venue or speak to the venue to check what it is I am getting. I always back up what I have discussed or agreed to via email, and I request a confirmation email in return. However, this is not foolproof, and I find when it goes wrong, it is always extremely exhausting, stressful and debilitating.

“Whenever someone or a company / organisation has got it right or gone above my expectations, I thank them personally but also back this in writing to them directly or to their manager or post a review. The flip side is when they have got it wrong, I won't spread it all over social media or write bad reviews without first reaching out to them and trying to discuss and educate them as to why it was wrong or what the problems were. It’s very time-consuming, but it usually brings a better outcome than just shouting it from the rooftops.

“The Time Tax is, to most, an invisible thing that doesn't exist, but to me it's a significant burden - I need to have extra time, use up extra energy, and usually a cost penalty to enjoy a reasonable life. Even close friends still do not understand how stressful it can be to go out or be spontaneous. Late changes to venues for a social function that I have been looking forward to can cause anxiety, unnecessary stress, and extra planning and cost.

“As my Dad always said, measure it twice and cut it once, so it's all about getting it ready and planned out in advance. I always allow myself extra time, as I’d rather be ready or get somewhere early than be rushing and getting worked up so I don't enjoy the experience.

“I used to get very angry, bitter and stressed about this, but that just made me and others around me unhappy. I have several sayings or phrases that get me through most things:

‘I have chosen to be happy as it's good for my health.’

‘Everyday is a good day if you let it be good.’

‘I know it's a good day as I have taken a breath, I am in pain, so I must be alive.’

“Don't get me wrong, I am not sunshine and light all the time, I do have days where all I want to do is curl up in a ball and for the world to just stop. The difference is now I can recognise the signs, and I have coping mechanisms. I also have my wife, who knows how to give me the proverbial kick up the backside, and to get my head back into life and not in the sand.”

Over 80% of Access Survey respondents said the Time Tax affects their increased stress or anxiety and 85% said clear and accurate disabled access information would reduce the extra time spent compared with non-disabled people - be part of the solution by sharing a disabled access review or listing your venue or business for free.