The Interview

Interview with Alan Hills - The chairman of The Middlesex Association for the Blind.


Alan lost his sight because of diabetes.

I lost my sight in 1996 as result of complications of diabetes. Previous to this I had noticed that my sight was getting worse and I spent a lot of time in hospital due to needed dialysis 4 times a week to clean out my kidneys. Over the next 6-9 months I became registered as blind and at around the same time I lost my kidneys and pancreas. However, I was lucky and had a transplant for them in July 1996. This obviously solved my kidney and pancreas problems and it technically meant that I was no longer diabetic, but did not have any effect on my eye condition.

During dialysis I used to do a lot of reading as I always have done throughout my life. Prior to 1996 I had very good vision. I was a company director of a major construction company that dealt with major construction projects, for example canary wharf. This was a very responsible job. However due to my illness I had to leave work in 1995, mainly for my own health and safety. Obviously it was a massive shock to lose my sight, but in my case it was a slow and gradual process, getting stronger and stronger glasses and other aids to help me. This eventually led to not being to read, my complete lose, the transplant and to today. Although the transplant of my kidneys and pancreas didn’t improve my eye condition it did stabilize it and it has remained pretty much the same for the last 11 years.

After the initial problem with coming to terms with blindness all I wanted to do was to see what I could with my life. As I said earlier I had been a very busy person in my sighted life, and it was not my nature to sit back and do nothing. I first went to a rehabilitation centre, where I tried several different support methods like the use of computers, which could enable a blind person like myself to carry on with normal everyday life. I found this process very useful. I didn’t realize how useful a computer is to a disable person’s life. In 1998 after I had sorted out my financial situation and my life a bit more sorted out I decided what I wanted to do with the rest of my life. I went to a college of further education and did a course in I.T. that was really pioneering stuff. In those days nobody really knew what to do with an impaired person and for the first six months of the course we just sat in the corner not really learning much. However, in the end I took the exams and got a qualification in I.T. From here I went on to do a teaching qualification so that I could pass my knowledge on to other blind people. For some years now I have been providing training to other visually impaired people. I have had to reduce the amount I do due to other health problems. The stuff that myself and others were teaching was such pioneering stuff it grew so big that we needed to employ full time staff and I stepped back allowing them to run the program.

I’m often asked what I miss the most, but you must remember that I’m only saying this from my point of view and that it is different for every blind person. Every blind person is an individual and is very different from each other. If you were sat here with my condition it would be very different for you than it is for me. Many different aspects can affect it, it can’t just be generalized. There is a big misconception that all blind people only see black. Most visually impaired see something. I have perception but can’t make out detail. I can for example see that you are wearing a red jumper, but I can’t see your face. This is made worse because you’re sat in a light background. I wouldn’t be able to recognize you if I met you again. I have preliverial vision to get around where I can get around safely. This also means that I can see better if I look from the outside of my eyes.

Obviously having no sight what so ever, like in your project, if your optic nerve is gone of course you'll see black. Very few people fall into this category, but it does happen.
If I was to describe my eye condition to you it will be like looking into a net curtain, everything is blurred. I obviously can't read printed words, but with the use of adaptive technology I am able to communicate.

Many people ask if I miss driving, my answer to this is no not really because I use to drive so much that it became a means to an end. What I personally miss the most is my work and reading. I’ve been able to overcome my problems with reading and writing with the aids of computers, I can now use mail on the Internet. For me and many other blind people this new way of communicating and access to information has transformed our lives.


Did you feel lonely when you first became blind?

Fortunately for me I do have a wife so I’m lucky. She is my main carer, so I did have good support. I’m also not a typical visually disable person to be honest with you. I'm not a type of person who sits back and let things happen, I want to go out there and live my life. I know lots of visually impaired people who have reacted differently. For example, I have a friend who is visually impaired who does all kinds of wild and adventurous things. Like bungee jumping, sky-dives, which just goes to show that if you have a mind to do it you can do it. Obviously there are limitations, both physically and practically but generally speaking.

To be honest I don’t see it like I have a problem with the world, it’s the sighted world that has a problem with me. It’s an awareness thing. Many people don’t understand me I think its an awareness thing, most people are not aware. People are often very nervous and don’t know how to approach me. When I’m out with my wife and we bump into people we know and they’ll ask her how I’m doing, why not ask me? The only problem with me is that I cannot see. I have a perfectly fine head; I just can’t read or write, a lot of society finds this hard to understand.

It’s the science world understanding that and more of the problems you’ll get in reality is that within a hospital scene that the people don’t understand the needs of the person, even in a hospital.

I do go to hospital very often. I'm involved in many associations; I am the chairman of Middlesex Association of the blind, I’m the chairman of the St Mary’s hospital kidney association, and also the secretary of the Harrow Blind social club. I do all my own work, nobody does anything for me reading or writing, and just try to get on and do thing the best I can. I’m not saying that I’m perfect, I have limitations, I just don’t sit back and expect everybody else to do it for me.

It’s amazing that in hospital and other medical places that they don’t understand the needs of visually impaired people. In my lifetime it has improved, but I can’t see it ever being integrated, well my lifetime, because they don’t understand, why would they. After all blind people are in a minority within society, only accounting for 2% of the population, which is very low.

I am an adaptive technology consultant, and I’m very interested in Iphone’s, mp3 players etc. I understand that blind people, especially younger people, but obviously they have problems because the world isn’t prepared for visual impaired people. It’s a sighted world and we have to accept that. However, I don’t think its wrong of us to expect people to be a little bit more aware, especially in a hospital environment. It still amazes me when people don’t say who they are, something which is extremely important to a visually impaired person. How can we be expected to know who people are without them introducing themselves, as we don’t have sight we can’t simply recognize somebody, its much harder with voices. They will just walk up and say “hello” its so easy to say “hello its Neal” but makes a huge difference. Even my neighbors after 11 years just say hello Alan. You do become familiar with voices after a while, but it takes a long time.

Did the loss of your sight effect your other senses?

No not really. People say your sense of hearing picks up a bit more but I don't think it does or did in my case. Obviously your hearing becomes more useful, so you are probably more aware, but I wouldn’t say it was improved. As it is now my main method of communication I find it very difficult when I can’t rely on it properly, when there is loud music for example. I don’t think my loss as heightened any other senses, like smell, you just become more aware of them.

What does it feel like to be in a situation where you are not familiar?

Well, that’s the most difficult thing for a visually impaired person really, when you enter environments that you’re not familiar with. You have to be organized and have to understand where things are. Fortunately for me I’ve always been an organized person, which helped when I lost my sight. A good example of when this happens is when you go to hotels and in particular the bathrooms there. Everything is typically white, which means that I can’t see anything at all, its like everything has gone. You can’t tell the difference between the sink, the toilet or the tiles, it just merges into one. For me I’d be able to work out where stuff was if there was some sort of contrast or colour, but often there is not. My wife usually gives me a tour around the room, which enables me to orientate myself and get a feel of where things are. This process takes a little time and without somebody to show me where stuff is would be very difficult and frustrating.

Once you have lost your sight it becomes very difficult to remember what it would be like to have sight again. You start to pay more attention to where things are, the layout of places and its things like this that allow me to cope with it all.

A particular example is that I can’t tell if a glass is full or empty, which results in a lot of broken glasses.

As I said situations have to be manipulated in slight ways to help a blind person however if you go into a hospital this doesn’t seem to be the case. No special adjustments are made like, examples include:

* Contrasts of rooms (very white), which is typically the worst colour for a visually impaired person

* I have to ask somebody to pour water for me, as I will often overfill it or spill it etc.

* Staff there don’t introduce themselves, doctors even walk around the beds without saying a word, expecting me to know who they are.

It’s the simple things that make a huge difference. I would just like people to be a bit more aware. Many people wouldn’t even know that I was blind to look at me, similar to a deaf person, but if you saw a person in a wheelchair you would automatically assume they were disabled. They’re isn’t always a sign, which is understandable but when I say that I’m registered Blind I don’t think its wrong to expect them to be alert to this, but this doesn’t always happen.

We can be our worst own enemies at times though. There is no reason why a visually impaired person should be rude to anybody. The situation that your doing in your piece is obviously highlighting a very dramatic experience. One minute your sighted and the next your not. My process was gradual, so I can’t really relate to that type of experience. Sometimes people can be very angry, Why me? etc.

We also have to be very careful how we handle these situations. You can almost get more out of life by being friendly. It’s how you go about it. I don't expect people to rush and help me because if I need them to I will ask and expect people to be understanding, I don’t want to ask for help, but sometimes I have to.

A classic example is when you assist a visually impaired person to cross the road. They may come across rude, and there is no excuse for this. We don’t always need help, but still there is no reason to be rude. Sight conditions can change from day to day, which can affect the person’s mood.

Of course losing my sight has had a great effect on my life, and there isn’t a moment that goes by where I don’t dream about my old job, which may sound weird to you, but I did really enjoy my job. Many visually impaired people find it hard to find jobs over 75% are unemployed, but there is no reason for this. Blind people still have perfectly sound brains in their heads, and could job to the same level as the sighted (obviously there are limits again). People see a blind person, but don’t really see the person and just see the disability. There are benefits available for such instances, but its not the same as working. Work provides stimulation for the brain something that is hard to obtain

The biggest loss is independence, being blind limits your independence. You can’t just jump in the car and nip to the shops anymore. My goal is to try and keep a level of independence and not let everybody do everything for me, but sometimes you don’t have any other choice and you have to ask for help. It’s a horrible thing to do, because then you become somebody else’s timescale. It has and does cause fiction between my wife and I, if I ask her to read something for me because its important, I do have means to do this but it can become very tiring. Sometimes she might be doing other stuff or trying to relax, so it becomes a burden which I don’t like being. I do go out on my own as I’m fortunate enough to have a guide dog, but still I can’t always do it.

You have to remember that you are only talking to one person about my experiences. I think I'm a person who's adjusted very well to my loss, but as I said there are people who take these things very badly, it can be very hard to come to terms with it.

I would say that the best way to do it is to accept that it has happened and to overcome it. I try fill my day, my week, and my year. I do a lot of volunteer work and deal with people who are still coming to terms with it. That happens a lot, several disabled people volunteer to help for disabled groups, which is good for the people who need help as the workers can understand better. It would be very difficult for you to put yourself in my position, just like if I was sighted it would be hard for me to be you.

There is no fortunately a lot of training material around, but a lot of it is common sense. As we have already touched upon with stuff like simple organization, things being in the right place etc. Also things like leaving doors open and the mobility issues like slops, steps, curbs etc. All of this common sense makes a huge difference to us, but sighted people don’t even think about this, why would they? Its about putting yourself in others positions a bit more.

A person who has just lost their sight would obviously be very traumatized, depending on the condition of the patient. Depending on how they have lost their sight, and the nature of accident. If it’s a sudden knock, they will be traumatized for years and it would take a while to come to terms with it. They would need a lot of support from their family and the system. Everybody around them would be confused as with what to do regarding you, but will obviously be caring by nature. You could be dead lucky, and get a nurse who was really understanding, but it would be luck. Regardless of any level of care that person won’t be equipped to deal with the situation. Unlike myself, I had time to adjust. I don’t think anything that I have said today would be going through the mind of a person who lost their sight in that manner. It is a very dramatic thing to happen to somebody. I don’t think you’d be able to get in touch with anybody today that has gone through that experience that would be willing to talk about it as it would be that traumatic.

The family is always the best comfort, due to natural instinct. As I said you might get a good doctor or nurse that understand but it doesn’t always happen.

This situation could be even more dramatic for your target audience. This would be because they haven’t seen much of life. I lost my sight at 50 so I had 50 years of sight, which is a lot of experience. A teenager would focus more on what they can’t do anymore, but the important thing is to think what you can do. If you put your mind to it you can do anything, but this is something that has to be learnt and won’t come instantly.

Computers and things like that have opened up a different world to all disabled people and life can be a lot better than you’d first expect, but you wouldn’t realize when the trauma takes place. You concentrate on all the downsides, can’t go to the pub anymore, can’t go to the football match etc.

It’s a very interesting area because there is a big gap. There’s the children going to school, who are looked after by mainstream education, but I get lots and lots of parents of people of your sort of age, sixth formers etc (our target group) where the support is lost. The parents ask where they can find support, what they can do, its almost as if they are forgotten about after mainstream education. They want the same sort of things that you do, i.e. the internet, mobile phones, mp3 players etc. There are ways around this, and if you can get past the initial thoughts of missing out in life, it’s amazing what you can do