There is one final taboo in our culture. These days we have become used to people talking and writing about the most personal of subjects such as sex, mental illness and death. Yet there remains an aspect of our lives which is rarely discussed openly - the whole business of going to the loo.
Wheelchair users are perhaps the exception. We are forced by our circumstances to talk about it - with our family, our carers, our work colleagues and with medical professionals. I'd hazard a guess that I'm the first person to write an article about it for this website. Earlier this year a contributor to Radio 4 commented that "disability is all about toilets". This might seem like an exaggeration but there is a lot of truth in that remark.
When you become a wheelchair user going to the loo ceases to be a quick and simple task. Suddenly it requires planning, people, specialist equipment and the allocation of time in one's daily schedule. You can no longer just "pop to the loo" (if you ever hear me using that expression, you will detect a certain irony in my voice). In my case, I need the help of two personal assistants (personal assistants or PAs is now regarded as a more appropriate term than carers) and usually a hoist to transfer between my wheelchair and the toilet. During the recent assisted suicide debate in the Lords, one speaker talked about how dreadful it must be to have someone else take you to the toilet. Well, that is normality to me.
While I'm at work, a toilet visit usually takes 25-30 minutes. There are two reasons for this. Firstly, I always use a hoist at work to transfer between wheelchair and toilet. As well as being a time-consuming process, dangling in a hoist is also pretty uncomfortable so I'm not particularly fond of using it. However, I have a duty to comply with health and safety requirements and to fit in with the needs of my PAs. Hoists can be fixed to the ceiling but I use a portable one to enable it to be transported to other buildings if necessary.
At home, my PAs usually lift me manually using a two-person method, which is considerably quicker - it takes about 10 minutes. My home PAs don't particularly like using hoists and I don't weigh that much (seven stone). However, manual lifting is only possible at my flat because I have a commode with a removable back rest that makes lifting relatively safe, if two PAs lift me together. Also, as I work full-time and sometimes go out in the evenings, I only need to go to the loo at my flat a couple of times on a typical weekday, so my home PAs are not lifting very often. My home PAs and I have assessed the risk and come to the conclusion that the risk of them harming themselves is minimal if they lift me using the right technique. For health and safety reasons, I would never ask a PA to lift me if she felt uncomfortable about it and I would certainly never expect one PA to lift me on her own. Similarly, I would never want PAs to lift me manually on to a normal toilet as this would involve one of the PAs having to twist her back in a potentially damaging way.
The second reason why toileting takes ages is simply that, because of the nature of my disability, it can take me longer physically to go to the loo. My body has functioned in this way since I became tetraplegic and it's something I've just had to learn to accept. (Ironically the problem became worse after some medical treatment a few years ago which was meant to solve it). It's possible that there's also a psychological dimension to it. While I'm sitting on the loo I need a PA to hold my head and body steady. To be honest, I've never quite come to terms with needing a second person to stay in the toilet with me. It feels like the ultimate intrusion into my personal space. To preserve some privacy I always ask the second PA to wait outside in the corridor until she's needed again. I can just about cope with an audience of one, but two would drive me round the bend.
Occasionally a trip to the loo can take even longer, if I find that it's already occupied when I turn up. Now and again, an able-bodied person seems to develop an intense desire to use a toilet that's meant to be for disabled people only. The most famous case occurred in Wigan when a couple were found having sex in an accessible toilet during a football match (it was the away end). Thankfully, I've never come across a couple making love in the toilet I use at work. But sometimes I do find an able-bodied person using it as a dressing-room to prepare for an evening out.
Twelve minutes is the record amount of time I've had to wait while somebody able-bodied with as much consideration as an amoeba commandeers the accessible toilet. As my PAs and I waited with growing incredulity in the corridor outside, I couldn't help speculating on what the person was up to inside. Were they carrying out top-secret yoga exercises? Were they practising their disco dancing? Were they trying to turn themselves into a drag queen?
However, the prize for the most startling behaviour by an able-bodied person near an accessible loo goes to a woman I encountered recently at Oxburgh Hall in Norfolk (a beautiful National Trust property). As I went towards the toilet, she asked me crossly, "Do you need to use it urgently?". I felt like shouting back, "It's not relevant whether I need it urgently or not. You shouldn't be using it in the first place." Frankly, this habit of able-bodied people taking over accessible toilets is as annoying as non-disabled motorists taking advantage of disabled parking spaces. You can now obtain stickers for toilet doors which declare: "If you're not disabled, bog off". It doesn't win any awards for poetic language but it does convey the message clearly and firmly.
When a loo visit takes 30 minutes, it has a number of repercussions. For a start, it forces you to become adept at forward planning. If I know I have a meeting at 3pm, I have to decide by 2.30pm whether or not I need the loo before the meeting starts. If I don't go promptly at 2.30pm then I will be late for the meeting. However, even when I'm organised, fate can intervene. There have been occasions when the phone has rung just as I've been about to go to the loo. Most of the time I pick it up in case it's something important. But that has the inevitable result of making me miss the start of the meeting.
If you are spending a long time in a room you need the environment around you to be comfortable. The BBC kindly installed air conditioning in my toilet, to prevent the temperature reaching unbearable levels. This is particularly important for my PAs who are moving around and having to physically exert themselves to transfer me on to the toilet. Similarly, when I discovered that the toilet seat was painful to sit on for more than a couple of minutes, the BBC fitted a different one. (Unlike most people with spinal cord injuries who only have limited feeling in their limbs, my legs seem to be more sensitive than other people's).
Of course, the most frustrating aspect of loo visits taking so long is that it keeps me away from my desk for a significant proportion of the day. Typically I go to the toilet at least three times in a day which adds up to an hour and a half. That means I have almost eight hours a week less time available to me to do my job than my colleagues have. The knock on effect is that either I get less done, which leads me to feel guilty that I'm not pulling my weight on the team, or I end up working late, which eventually leaves me feeling tired. There's no easy solution. I often wonder if my colleagues realise where I am when they see I'm not in the office. Do they guess I'm in the toilet or do they think I've nipped down the pub?
However, there is another more far-reaching consequence of needing a hoist for toileting. It restricts how much time I can spend away from home or work. Let me explain why. There are hardly any public accessible toilets with a hoist installed so if I'm going out with my PAs and want to use the toilet at my destination I have to take my hoist with me. This is easier said than done. Although my hoist is designed to be portable, it is still inconveniently large. It's certainly impossible to fit both me and a hoist in a standard wheelchair-adapted car or black cab. This means booking a second vehicle just to transport the hoist, with all the cost that entails. It makes me very reluctant to make long journeys out of London. If I do go out with my hoist, it's so bulky and difficult to manoeuvre that carting it around at my destination isn't really an option. This means I have to find somewhere to leave it, somewhere where it will be secure and won't be in anyone else's way. That can be quite a challenge and isn't always feasible.
However, most of the time there's no point taking a hoist anyway because almost all standard 'accessible toilets' are too small to accommodate a wheelchair user, two PAs and a hoist simultaneously. When I started working at Broadcasting House, the disabled loos in the building weren't large enough to meet my needs, so the BBC went to a considerable amount of trouble to create an extra spacious accessible toilet in the building. Sadly, Broadcasting House is one of only a few buildings I've come across that is hoist friendly. As a result, I have to assume that I can't go to the loo while I'm out, limit my trips to roughly three hours and stay relatively near to my home or workplace. If I'm going out to a bar or restaurant with friends, I restrict the amount I drink to reduce the chances of me needing the loo. A male friend, who's also a wheelchair user, takes a specially designed bottle with him when he goes out and urinates into that, but the arrangement of the female anatomy rules out such a device for me. Luckily, my job doesn't involve much travel and I live in London so there are a lot of interesting places to visit in my spare time which are within reach.
Over the years I've noticed that I tend to need the loo less in the mornings and evenings than the afternoons. So when I want to go round an exhibition in London I always do so in the morning. That way I maximise my chances of being able to see all the works on display before my bladder forces me to return home. And whenever I want to go to the theatre, I always book up for an evening performance.
Sadly, as I've grown older, my body's ability to 'hang on' has deteriorated. In recent years there have been a few times when I've wet myself at the theatre because I haven't been able to access a toilet. (The last time it happened was during the play Three Days of Rain - I think all the water effects on stage subconsciously encouraged my body to want to pass its own water.) This used to embarrass me but now I've come to terms with it and whenever it happens I just metaphorically shrug my shoulders. After all, there are far worse problems one has to deal with in life. And it's not my fault if toilets are not fully wheelchair friendly.
At this point, anyone reading this column who knows me will be rather confused. For they will be well aware that I spend whole days sightseeing, attending weddings, and visiting friends and relatives in different parts of the country. The only reason I am able to do this at the present time is because I live with my parents at weekends. And at the present time my dad is able to lift me out of my chair manually on his own. My parents might need to use a hoist in the future, but at the moment my dad is capable of doing a manual lift.
This transforms my life. Not only is a one-person manual lift twice as quick as a two-person lift and 10 times quicker than using a hoist, it also enables me to use virtually any accessible toilet. This in turn means, for example, that I can travel to see relatives in the Midlands, watch friends getting married in Cambridge and indulge my interest in history by exploring the Sutton Hoo Museum in Suffolk. In other words, it gives me freedom. It gives me a normal life.
In fact, when I'm with my parents, it doesn't even matter if the building I'm visiting lacks an accessible toilet altogether. If my friends only have a small toilet or it's upstairs, that isn't necessarily an insurmountable problem. Why? Because most large towns now have a supermarket on the outskirts with a very decent accessible toilet. (In fact, I don't think of these stores as supermarkets. I see them more as toilets which just happen to sell some food alongside). Environmental campaigners may question the green credentials of out-of-town shopping but the major supermarket companies have improved my quality of life no end by providing me with a place to pee.
I've lost count of the number of supermarket toilets I've frequented during family holidays around the UK. Yes, I could probably write a guide book to the country's best supermarket toilets. In the past, I used to buy an item whenever I called in to a supermarket to use their toilet, maybe a cheap bar of chocolate or a newspaper. I felt guilty otherwise. But now I just head straight to the loo and straight out again. My reasoning is that these companies generate such large profits that they won't mind me using their facilities without purchasing anything. They can mention it in their corporate social responsibility reports as a social service, if they like.
I'm also a big supporter of the RADAR scheme. After the 1970 Chronically Sick and Disabled Persons Act was passed by Parliament, councils across the country vastly increased the provision of accessible public toilets. Soon, however, the new facilities were being exploited by drug addicts, prostitutes and homeless people. As the cost of maintaining these toilets rose, councils began to close them down and, by the end of the decade, the future of the accessible public toilet looked bleak. At this point, the disability organisation RADAR proposed a scheme under which the use of many local authority accessible toilets would be restricted to keyholders only. Stratford-upon-Avon was the site of the first such toilet and now there are thousands of toilets in the scheme. Whenever I go out with my parents I always make sure I take my RADAR with me. This single key can open any RADAR toilet in the country.
But what about disabled people who don't have wonderful supportive parents to assist them? What are they supposed to do? Well, there is a light at the end of the tunnel. It's only a miniscule light and it's a very long, dark tunnel but it's a light none the less. After three years of lobbying by disability campaigners, the British Standards Institute has recommended that fully accessible toilets be created in all new large public buildings. Known as Changing Places toilets, they won't just be large enough for a person to bring a portable hoist, they will actually have a hoist already installed. Furthermore, they will also contain an adjustable changing bench so that those people who use continence pads can have them changed without the indignity of having to lie on a dirty toilet floor.
So far only about 70 buildings in the UK have such toilets, so don't uncork the celebratory champagne yet. We still have a long way to go. But I'm hopeful that in the years to come more and more places will have toilets with hoists and that eventually I will have the same freedom to travel with my PAs as I currently do with my parents. It's reassuring that finally society is waking up to the fact that people like me who require a hoist have as much right to go to the loo as anyone else. Thankfully, it's now officially recognized that disabled people shouldn't have to limit outings to a couple of hours - or not go out at all.