My name is Robert Taylor. I was unlucky enough to inherit an eye condition called Retinitis Pigmentosa through my maternal line from my grandfather.
I have just recently returned, with my wife, Jane, from a fabulous trip to East Asia. Overall, it was very enjoyable indeed. On the other hand, despite informing the travel company of my disability right from the get-go, they did not seem to take this into account when arranging our stays. I do not intend this to be a specific attack on the travel company involved but want this blog to be educational to assist them and others to take account of customer’s disabilities in general and blindness in particular. Their website does proclaim that they are expert in arranging trips to Asia. I am sure they are but I do think that all companies should take account of people’s specific requirements especially when it involves disability. You are the experts. It is clear that you have a responsibility under the Equality Act 2010 to comply with these requirements. I firmly believe education is the way forward as litigation only hands the cash over to the lawyers. Let me make it clear here, I am not anti-lawyer, but I think a non-confrontational stance is the best way to bring people on side with your own ethos.
During the forthcoming episodes I will name the travel company that arranged our trip for us. Notwithstanding the blindness shortcomings, it must be said, they arranged a terrific holiday. I would have no hesitation in recommending their services to any readers of this blog.
It was during one of our stays on this trip that I reflected on the service we had received and thought to write this blog. It will not be full of me having, solely, wonderful trips around the world. The title, “Travelling Blind,” will set out to highlight varying challenges that blind people face in their journey through everyday life. These experiences, I must point out, will be my own. Other blind people might read this and think what the hell is he on about, I never have a problem with that particular issue? Having said they will be my own I am willing to post up other people’s experiences as well, so if you want something mentioned please do not hesitate to contact me.
I am too shallow not to accept invitations from holiday providers to go and try out their facility, and offer helpful suggestions on how they might make the experience more inclusive for partially sighted customers. You are more than welcome to make contact with me through the contact page on my website.
I was first diagnosed with Retinitis Pigmentosa, RP, well before I was ten years old. My parents did not share this diagnosis with me until I was in my early teens. I was lucky enough to be leading a relatively normal life. I think, overall, they got this call right. I think at seven or eight I would have been terrified by this information and would not have been able to assimilate it. Once again I realise others’ experiences will be different. Everyone has to accept it is a horrendous decision for a parent to make, when do I tell my child that he or she will be blind one day. I think I learned of my condition at about the right time. I was always prepared that I would, providing I live long enough, go totally blind.
There are many forums where victims of blindness can voice their opinions, anxieties and other concerns about their condition. In the main I think I have carried myself with confidence despite the blindness. I have had my moments though. When I read of blind people’s anxieties and concerns within these forums it is, sometimes, quite soul destroying. I am lucky and occasionally find myself feeling other blind people’s hurt on their behalf. Not everyone deals with life’s challenges in the same way. Each one of us is unique. My deterioration has been gradual although I am sure that, during some periods, the decline has accelerated or slowed in equal measures. The truth is, in my position, I have never noted change on a daily basis.
My form of RP does not follow the pattern that most people associate with the condition. I, peculiarly but not uniquely, have lost my eyesight from the inside-out. I believe a more common pattern is to lose it from the outside-in and end up with tunnel vision. I still have a modicum of peripheral vision. This small amount of side-sight allows me still to navigate which means I can still get out and enjoy a walk around our beautiful country lanes. It makes me feel so good to hear bird-sound. Give me a directional sign, with the smallest or biggest letters in the world, I wouldn’t stand a chance.
Over the intervening years I have gradually adopted, and relied upon, the other senses. They all play their part in reducing the effect of the loss of sight. Sound is mega-important to me. I cannot see anything from the centre of my eyes, the part of the eye that deals with detail. I, therefore, have no chance of recognising faces. If your voice is not to the forefront of my sound library I am afraid I might have to ask you who you are. Please don’t be offended by this, just play along with me.
I always feel for men and women who are diagnosed much later in life. Why should they be any different, I hear you say? As mentioned I have been toiling with this diagnosis ever since I was a teenager. Imagine then, just waking up one morning and finding out you are losing your sight at such a terrific rate you don’t even get a chance to absorb the loss of such an important sense. Imagine having a family, they are reliant on your earning capacity and, suddenly, you are thrown into this cavern of uncertainty. To whom do you go? Who can help? Can I get financial support? Can I be cured? Will my family still support me? Will I lose my job? The questions are endless, the worry is endless and the outcome is far from certain. It will take them weeks or even months just to return to an even keel. My circumstances allowed me to deal with all those practical concerns over a longer period. I also had my late grandfather as an example and, as far as I can recall, he led a pretty fulfilling life. I think I am in a better position than him. I am 64 and by the time he reached my age memory tells me he was far worse than I was at the same time. I recalled him using a white stick, the old walking-stick type, from as far back as I can remember. I only adopted a symbol cane from 2018 at 58 years old. I was eight by the time my grandfather was 58 so have a good clear memory of this. I remember guiding him to the corner shop whereas I can still find my way to the village store without assistance. I definitely need help to do my shopping when I get there and the staff, without a single exception, are all immensely helpful.
I have thought to rate accommodation, excursions and attractions by using a marking system. I will not be using stars, rosettes or other well-known symbols but will adopt the white-cane system. The best places can be awarded five white-canes whilst the worst will receive no white-canes. Remember, as before, these will be based on my own experiences and are, by no means, scientific. I will be looking at accessibility, interaction of staff and can I use the place independently of any assistant if travelling on my own.
This is enough of an introduction. I plan to pop a fresh update in these pages on a regular basis from now on. I will, over the coming weeks relay the ups, and in the main they were ups, and downs of our marvellous holiday to Singapore, Malaysia, Thailand and Dubai. Interspersed with this will be recollections of my journey through life with impending blindness. As far as is reasonably practical I am now as good as totally blind.