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Vision – Pandora

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Profile

Age: 40    Height: 5ft 7ins

Lives in: London

Condition:
Severe macular degeneration

Assistive aids:
Magnifiers, screen reader, synthetic speech software for mobile phone

Links: Case studies | Related statistics

What I can do

  • Select wardrobe, dress and groom independently
  • Prepare meals independently
  • Walk upstairs unaided
  • Navigate way to a previously visited place
  • Use an ordinary telephone at close range
  • Read a newspaper headline at close range
  • Understand a theatrical performance if audio described
  • Appreciate a gallery or museum visit with audio description
  • Use a mobile phone if buttons sufficiently tactile
  • Read and send texts using synthetic speech
  • Send and receive emails using screen reading software
  • Fill in an online form with screen magnification except where the font pixellates

What I cannot do

  • Has difficulty recognising a friend across the street
  • Cannot read facial expressions or distinguish eye colours
  • Cannot read a short newspaper article unless using powerful magnification
  • Cannot watch a foreign language TV programme with sub-titles unless audio-described.
  • Cannot read Braille
  • Cannot read information on food packaging, clothing labels or price tags
  • Cannot go downstairs in poorly lit conditions without using a handrail
  • Cannot navigate touch screen menus or restaurant menus
  • Cannot navigate the stock in book shops, music stores or libraries

Occupation

I am training to be a therapeutic counsellor while seeing clients part-time. I also work as an access consultant in a lot of galleries in and around London where I advise on design in relation to access for visually impaired or disabled people in an exhibition environment. I graduated as a textile designer from Central St Martins College of Art and Design and worked as a freelance designer for a couple of years and then within disability arts for several years as a volunteer before retraining in IT at the RNIB College in Redhill. After that  I worked with disability rights and policy organisations.

My condition

The condition I have is part of the macular degeneration group of visual impairments. These affect mostly older people, who acquire failing eyesight as they advance in years.  My condition, however, began to show when I was young and appeared literally overnight.  My condition is genetic but since neither of my parents nor my siblings have a visual impairment, it is likely that the genes for my impairment go back generations.

The hardest thing about my condition is coming to terms with having no choice but to learn to live your life differently.  For me, it is aspects such as my independence, not being able to drive, read books, newspapers etc in a comfortable manner i.e. in bed, or on the sofa, but needing specialised equipment to do the simplest of tasks that others take for granted.

As a keen traveller I’m scared to go travelling alone because I fear getting stuck in a place completely unfamiliar to me and not being able to read a map, find a hotel or read a bus timetable. Elements of this also happen in the UK, even in London where I live.  If I need to go somewhere unfamiliar to me, I end up taking a cab. Maps can be misleading and useless if you are unable to read the street names, which are in many cases located high up on the building façade.

My condition has had a huge impact on my career choice. Despite finally finding a career path I wish to pursue and am passionate about now, I spent a long time drifting in and out of work that, albeit meaningful and educational, I wasn’t really passionate about.  It’s very hard to be autonomous when someone else is telling you how advanced personal computers are nowadays and how visually impaired people make great telephone operators or piano tuners – as it’s assumed visually-impaired people have bionic hearing. I find this highly frustrating, in fact downright patronising.

The hardest thing about my visual impairment is the human-to-human contact.  For years I secretly revelled in the fact that my visual impairment was undetectable, people simply were unable to see or in fact know that I was visually impaired.  I remained hidden, therefore could act as a ‘normal person’ in my daily life. Nowadays the situation is vastly different, as my condition affects my central vision; I am unable to focus on what it is I’m looking at as it appears pixellated on a micro fine scale.

I’ve noticed over the years the pixellation area getting larger and larger, resulting in my looking through my peripheral vision in order to focus. Please note: my peripheral vision is not 20/20).  So when I believe I’m looking directly at someone they perceive me as looking next to them, or to someone behind them.  This has been ever so noticeable within the past year or so, I hate it, I feel embarrassed by it, and hate the fact that I can no longer hide my visual impairment.

It has affected the way I walk down the street; I rarely even look up and never try to make eye contact.  The next step will be to embrace tinted glasses in order to reclaim a sense of control over my vision, and to stop the second glances I get from people or the checking to see if I’m talking to them, or someone behind them. This is a notion I’m dreading, I’ve put it off for ages, but it’s yet another hurdle in the steeplechase that lies before me.

A typical day

I get up between 7am and 8am in the morning and go to my counselling placement or college depending on the day and return home around 5pm. I mostly travel by bus in London. I eat around 7.30pm and spend a couple of hours in the evening writing up case notes or reading via my Daisy machine. At the weekend I may meet up with friends or go to the theatre, cinema or a gallery.

Good designs and how they improve my life

Any form can be good design to me if it empowers my life and enables me to become more independent.  I benefit from having access to good services such as audio guides in exhibitions.

Design is fantastic but it’s as if you are being penalised for having a disability because the aids and adaptations that are crucial to my independence are so expensive. For example, the CCTV I use to read everything unless it is online costs in the region of £2,000. Similarly, a personal computer has vast potential for all users but will cost an added £500 to £700 for the adaptations or software that a visually impaired person needs in order to access it. This is the hidden cost of disability.

Audio guides are examples of inclusive design because everybody can have that experience and enjoy it, and to me that’s the key to good design.  They allow me to go into an environment, which would possibly be inaccessible, and have an experience the same as everybody else and it also gives me formal information. It’s discreet and there are other people with similar ones, probably because they don’t have English as a first language.

Getting a design with such a broad appeal and that also has functionality is in my idea of the best design. I have a specific handbag, which is very well designed: it has got all the pockets and organisational features that I could ever need.

Lessons for designers

Do not assume anything about how an individual who belongs to an exclusive group lives their life. Everybody is unique. My experience may be different from another visually impaired person and I think that’s the key. When I say to people that I am visually impaired, they automatically think that I can read Braille and I don’t. My advice is that if you want to embrace an individual then speak to an individual but don’t assume anything, don’t do stereotypes.

Designing for an exclusive group should never compromise on the aesthetic appeal of something. A good example of this is the RNIB diaries, which are in really large print. This approach supports somebody but they look very clinical and are not aesthetically pleasing. Just because I am restricted in some areas of my vision, it doesn’t mean that I don’t like pretty things.

Poor designs and how they impact my life

Poor design equals harder work. In my case, the majority of mobile phones aren’t accessible for me and I have to carry a magnifier in order to use one or use one with speech output. On my previous phone, when I received an SMS, I would have to go into my bag take out a magnifying glass and put it onto the screen. Therefore I am completely vulnerable if this happens at night. That to me is hard work. For my present phone I found a retailer that gave me an accessible phone in terms of software but there was no choice in the handset, which is inaccessible because the buttons are so tiny and there is no colour contrast or tactile feedback.

The world is becoming more and more digital. I am excluded from internet cafes because they don’t have specialist software on their computers so I can’t access their services.

Everything is becoming smaller. Why create things with screens that just get smaller and smaller? Why not design something without a screen that everybody can use?

Five most important ‘things’ in my life

  • Family and friends, first and foremost.
  • My independence – I really do value it and have to be able to survive alone.
  • My home – I am living in a very small one-bedroom flat but it is a place where I have lived during the last 15 years; everything I own, my entire world, is in my flat so it’s incredibly important to me.
  • My inhaler – I am an asthmatic and over the years I have been dependent on my inhaler, which has to be with me at all times. I am unable to leave my house without it. If I didn’t have it, I would have died.
  • My screen reader  – it enables me to read small print (newspaper, letters, correspondence). Without it, I am rendered so inefficient. I had a period of time where I didn’t have my screen reader for about a month; the amount of things that I was unable to do affected me, it was really distressing. That simple piece of equipment has huge impact on my life, it’s something that I rely on, day to day.

I’d also add my methods of communication: my TV, mobile phone, radio, landline, PC. I live alone and it’s how I communicate with the outside world. I think without those modes of communication I would be isolated.

Message for designers

If I was approached by a designer and asked which areas of my life could be improved, I would hope that the designer would listen to me but not design for a specific group as if it’s somehow our fault.

I am visually impaired it’s not my fault! The social model of disability is about taking away the problem from the person and actually looking at the environment to support the person. Basically having a good dialogue with the person, really getting to know the person and what their needs are. Don’t assume anything and stop stereotyping.