How to Communicate with People Who are Blind or Vision Impaired
Part 1: General Meeting and Interaction
Monday September 28, 2020
Most children with retinoblastoma and survivors have some degree of sight loss, and many experience awkward healthcare interactions as a result. This 3-part series shares survivor and parent tips for medical professionals caring for and working with people who are blind or vision impaired. Part 1 focuses on general meeting and interaction.
Parents, survivors and medical professionals work together during a breakout session at One Retinoblastoma World 2017 in Washington D.C.
Earlier this year, WE C Hope child life specialist, Morgan Livingstone, and her former intern, Jocelyn, spoke at several medical and child life forums about communicating with patients, parents, colleagues and students who have sight loss. Jocelyn has lived with low vision since childhood, and Morgan asked our retinoblastoma community for additional insights to deepen her understanding, particularly of issues specific to retinoblastoma care.
Over the next three blogs, we share the vast range of responses from parents and survivors. In this mini-series, you will find:
- General Meeting and Interaction (below)
- Offering Assistance, Access and Technology (12 October)
- Medical Care and Support (26 October)
We hope you will find this detailed advice and insight very valuable as you continue to bring the best care to your patients and their families, and work together with us to advance care.
General Meeting and Interaction
DO identify yourself by name, and your job/staff position. Do this when entering a room, or when an individual with vision impairment approaches you. Remember this individual cannot read your name tag, and it is important to share these details verbally. This includes all staff who will be involved in a medical procedure, even if they will not be required to speak with the patient or parent during the process.
Say your name again when initiating a conversation – don’t assume the person will remember all names or recognize your voice. You don’t need to formally introduce yourself each time – “This is Jane…” will suffice.
In a group setting, it can be helpful to ask that everyone state their name in turn around the room. This will help the person know who is present and where they are sitting, but please don’t explain this fact without first privately seeking permission from the blind or vision impaired individual. Doing so highlights disability, which can cause unnecessary discomfort and embarrassment. Such explanation is valuable for medical and nursing students in the classroom.
Where appropriate in work or social meetings, adding a fun fact to each introduction creates an ice-breaker when people don’t know one another or haven’t met for some time. This avoids drawing attention to the person’s disability, and helps ease tension or discomfort for all participants.
DON’T touch the person without consent, and never grab, push or pull the person in any way. This common sense and respectful behaviour should apply to everyone. But it’s particularly important for blind and vision impaired people who do not see the contact coming and cannot defend against it.
Always offer assistance directly to the individual if you think they need help. In a crowded or noisy environment, a brief, light touch on the shoulder, or just above the wrist, can help indicate to the person that you are addressing them. Anything more will likely be a deep invasion of personal space. See below for specific do’s and don’ts on offering assistance.
“I am a bilateral Rb survivor with bilateral enucleation. I am a fiercely independent woman, having grown up blind from the age of 2, with parents who taught me to stand up for myself. Early on in my own child’s Rb care, I took my baby in alone for a routine EUA. A nurse introduced herself and led me in to an exam room for some pre EUA procedures. The exchange seemed to be going fine until she suddenly took my baby out of my arms with no warning at all before grabbing my hand and placing it on the chair. My heart was racing in response to the sudden lightness of my arms and my previously calm baby’s instant wailing.
The nurse thought she was assisting me to sit, concerned that I might drop my baby while finding the chair. But she never asked what I needed, or warned of her intention. It was a huge violation for both of us, at the start of a day full of invasive procedures. I wasn’t able to pull either of us back the entire day – it was our worst EUA day ever, because of that one interaction.
When I complained, I received an apology and was told the nurse was new in the clinic and wasn’t yet fully aware of etiquette working with blind patients and families. Well I’m sorry, but you don’t learn this stuff “on the job”. People with degrees of sightloss make up a significant proportion of society and will interact with all points of medical care – so doctors and nurses should have these skills when they qualify. My child’s EUA day is not a teachable moment for basic courtesy. Maybe you think “it’s just one patient and they’ll learn”, but my child is that patient, I am that child’s mother, and the trauma of that EUA day has stayed with both of us.”
DO tell/ask the person when you’d like to greet them with a handshake, hug, elbow bump, bow, or other greeting. Never grab the person to initiate the exchange. Ask “may I…” – and say what greeting you are offering. Wait for the response, then initiate or complete the exchange.
The enquiry ensures the person doesn’t feel their personal space has been invaded, and offers a choice (they may want to avoid direct contact for health or personal reasons). Similarly, if the person initiates a greeting gesture, give a verbal acknowledgement as you accept or decline – choosing to ignore is rude.
DON’T raise your voice. Vision loss affects the eyes. Unless the person tells you they can’t hear you or they need you to slow down and speak more clearly, speak with the same volume, tone and speed as you would to anyone else.
DO address the person by their name each time you speak to them specifically in a group situation. The person cannot see your body language, so you need to verbalize your intention to address them individually.
DON’T censor your language. Words like look, see, read, and watch are part of everyone’s daily vocabulary and won’t offend most individuals with sight-loss. For example, it’s perfectly fine to ask, “Did you have a chance to look through the documents?” or “did you see the oncologist yet?” Dangerous situations are an exception – saying “stop!” instead of “look out!” helps avoid an immediate threat.
DO verbalise your responses and actions. Avoid using nods, head shakes and hand gestures without equivalent verbal cues in conversation. Your body language won’t be seen or acknowledged. Deliberately using these gestures with the knowledge that they cannot be seen is deeply offensive.
DON’T ask the person if they know X who is also blind / has a guide dog, or start talking about someone you met or worked with who was blind. If this individual were sighted and had red hair, would you ask if they knew someone else in the community with red hair, or start telling them about a stranger or colleague in your life with red hair? OK! So why is this any different?
People with vision loss don’t want to talk or hear about sight loss all the time, even at the eye hospital – we are individuals and want to be treated as fully rounded humans. We want to share interesting parts of our lives that help build confidence, rather than have attention constantly drawn to pieces of ourselves that can feel diminishing.
DO start conversations with the person about their life, work, interests and hobbies beyond sight-loss (and cancer). You will find we are just regular people who enjoy many of the same things you do. So don’t assume we can’t do well in school or work or life, because we can and we do. We may have no or low vision, but we can still do most things sighted people can do – and some of us do things sighted people never do. Take time to talk with us and you’ll likely learn all sorts of fascinating things about us beyond our sight-loss.
DON’T make faces or gestures to yourself or others while talking with the person. Don’t scroll through your smart device or engage in other simultaneous activities because you think you can get away with it. An individual with partial or complete sight loss can usually tell when the person they are speaking with is not paying full attention. It’s distracting and insulting. So be present and polite – look at the person when talking with them – when you do, they can follow your voice and return your gaze more effectively.
DO ask questions. If you are curious about the technology a person is using, what they can or can’t see, or how they complete a particular task, don’t be afraid to ask. Most people with a disability would rather you ask questions than make (usually incorrect) assumptions. Please also respect the person’s right to choose whether to answer questions or not.
DON’T move furniture or other objects without consulting or telling the person, and never interfere with their personal items. A person’s possessions are an extension of their personal space – not touching them is a matter of respect and decency for everyone, but especially important for individuals with sight loss. A person may have a particular system for setting things out so they can be easily found. When you relocate them, you effectively hide them, disrupting the person’s day and causing unnecessary distress.
Moving large objects such as furniture without warning can be dangerous. Moving small items may be equally so as the person becomes increasingly disoriented in the process of trying to locate the missing item. Please educate nursing, cleaning, and other auxiliary staff about this to support inpatient and day patient families.
DO tell the person when you walk away from the conversation or leave the room. Even If the person has some sight and can see you walking away, they may not know which person has left the group. In certain lighting or noisy environments, all individuals with sight loss can find it hard to know when even one companion is moving away, and it can feel like the ultimate embarrassment to be left talking to the air.
You may be called away urgently or spot someone you really want to talk with on the other side of the room, but its common courtesy to say you are leaving. A simple “NAME, thank you for the conversation, I must go” or similar, will avoid unnecessary discomfort and frustration.
DO apologise if an interaction goes badly, and ask the individual how you can help to make the next one go better. This almost certainly won’t be the person’s first or last awkward experience arising from their sight loss. We are all different and there is no one cookie-cutter response that fits every scenario. We value conversation, the opportunity to tell and show you what works best for us as individuals. Together, we can help smooth the path for others who will come this way after us.
Read Parts 2 and 3
About the Author
Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.