In honor of blindness awareness month this October, I decided to finish this post! I drafted it this summer and then abandoned it because I found it difficult to write. For me, it’s like trying to describe my favorite type of movie– I can’t put the exact description into words but I know it when I see it. And if I think about it enough, I can find words, but it does take some thought. I don’t like to be cynical, but it would have been easier to come up with a list of 15 ways NOT to help people with RP! I decided to take the more positive approach, although I couldn’t resist throwing in some of my personal pet peeves.
If you’re a friend or family member and begin to cringe as you read the tips because you’ve done the opposite of these suggestions, don’t beat yourself up. We’re all learning. In fact, one of my best friends actually educated me on proper sighted guide and other tidbits after she read an article in the Chicago Tribune last year. The care she showed in taking the time to read the article meant so much to me and prompted me to write this.
If you have RP, you may have also found that it’s not always easy to figure out, much less verbalize, ways that your family and friends can assist you. I hope this list is one that you can pass on to your loved ones who want to be helpful. This list includes both my own opinions, as well as preferences of people I surveyed in several online support groups (a qualitative, unscientific poll!) I’m sure there are tips I’ve forgotten, but these are the ones that first came to mind:
- Try to allow the VIP in your life to ask for assistance instead of just taking over. If you see that your friend is struggling or hesitating, feel free to ask, “Need an arm?” Respect their response either way, especially if you are approaching a stranger using a cane. Chances are, they know where they’re going. Personal pet peeve: Both my sister and I can’t stand it when people ask someone else for help on our behalf without us even asking (i.e. “Random or Unrandom person, could you please help Joy down those stairs? or “Could you please grab Jenelle?” or “Pick that suitcase up for them”.) It feels demeaning to be spoken about in the third person, and it’s often not needed.
- When guiding someone, offer your arm. There is a specific way to be a sighted guide, and it doesn’t involve grabbing a VIP’s arm or hand and dragging or steering them. The person you are guiding should grab onto your arm just above the elbow. Walk at a normal pace one step ahead of the person, except when you approach stairs or escalators, in which you walk alongside the person. Personally, when I’m with a close family member or friends, we often link arms and walk together. It really depends on who I’m with, as well as the terrain and lighting. My sister and I have mentioned this before on our blog, but there are definitely people in our lives who can guide us very naturally and seamlessly and others in which it’s a little awkward. I can always sense when someone is comfortable and whether they’re making a showy display of helping. Personal pet peeve: Being pushed forward from behind. Please try to imagine how frightening this would be! Check out this article for more info on being a sighted guide. see.
- Offer rides whenever possible. Simply put: not driving sucks. It’s easy for fully sighted people to take for granted their ability to simply jump in their cars and go. Personal pet peeve: When someone makes me feel like I am a hassle to their day or schedule. Fortunately, this seldom occurs, but keep in mind that most of us feel burdensome enough hitching rides everywhere, so if there’s even a hint of annoyance, we feel it strongly.
- Slow down when entering a restaurant, store, or other public building. Adjusting from light to dark is extremely difficult. Slow your pace when entering these places to make it easier to follow or offer your arm.
- Don’t assume anything. If you see someone walking with a cane or dog, it does not mean they are totally blind. Whether friend or stranger, feel free to ask questions about how much or how little we see. This may feel uncomfortable, but keep in mind that most of us eventually get to the point where our lack of vision is second-nature, so while it might be something you’re worried about while walking next to us, it’s probably not on our minds. If you’re concerned about how much we see or whether we’re able to do something, simply ask. Personal pet peeve: When I show up to a party or family gathering, and someone asks, “how did you get here?” It’s one thing to ask questions with the intention of being helpful, but it’s annoying when it’s just being nosey.
- Find ways to include us in activities even if you think it may be challenging. I had a good friend who used to always plan bike-riding along the beach in the city with her girlfriends each year for her birthday. She told me that she thought about inviting me but figured I wouldn’t be able to see well enough to come along. I felt really left out and hurt about this. Yet just this year another friend suggested doing the same thing but offered to rent a tandem bike with me. The fact that she didn’t discount me and actually thought of a way to include me meant a ton. Personal pet peeve: Finding out that I wasn’t included in something due to lack of transportation or sight.
- If you approach an intersection and see someone standing with a cane or guide dog, do not wave, honk or beep at them to go ahead. In mobility training, we are taught to listen to the flow of traffic near us and to start walking when the cars driving the same direction as us begin going. If you’re honking, you are actually putting them in more danger. It is safer for you to just go ahead and let them cross once the flow of traffic is going their direction. Most cane or dog users will hold their cane to the side or drop the harness so that you know they are not going to start walking into the street.
- Offer help at cash registers and/or ATMs. If you are with someone who needs to sign a receipt, put your finger on the “X” or area where a signature is needed. Often people with RP can read the print just fine but can’t find the line to sign. Cash registers can be particularly stressful places for people with RP because there are often long lines of waiting customers, so the pressure to move quickly and efficiently is on. Since each credit card swiper is different, it is sometimes hard to find where to swipe our card and what to press. Cashiers can be helpful, but they often don’t seem used to having to help customers hit the “enter” button, even if they are carrying a cane or mention their impairment. They are usually preoccupied and stressed themselves trying to move their lines along.
- Keep dishwashers, drawers and cabinets closed. As many bruised shins will attest, dishwashers can be dangerous!
- Put things back where you found them. A person with RP relies on order. Even if it’s not the way you would organize things, most of us have our own systems to keep track of things, and messing with those systems messes with our day! Visual clutter makes life even more challenging for someone with a vision impairment. Personal pet peeve: When I go to someone’s house and put my shoes or purse in a specific place so that I can easily find it when I leave, and someone moves it, thinking they are being helpful. This used to happen with bottles and sippy cups at play dates when my girls where toddlers, and it created qutie the frenzied departure!
- Be extra-conscientious and helpful at parties, buffets, holidays, etc. Some of the most stressful situations occur at large holiday parties, baby/wedding showers, etc where there are lots of “self serve” type of items. I can’t tell you how many times my husband has (understandably) gone off to talk to people at a party, leaving me meandering around someone else’s unfamiliar kitchen looking for wherever they have placed the cups, plates, utensils, etc. Oftentimes people are in the midst of conversations and catching up since the last big gathering, and I feel rude interupting them to ask for help It’s particularly challenging if I’m with my children and am trying to get them fed or taken care of as well. Certain friends and family are really great about looking out for me. At a recent party, I felt so relieved when a friend casually led me to where the couches were and offered to grab a drink and snack from the table for me. Personal pet peeve: When I ask where something is and someone points and says, “over there”– saying this to someone with RP is like saying “It’s somewhere in this house, now go explore!” I know it takes a few extra steps, but physically hand the item to the person, saying “here you go” so that we know something is being handed.
- Write with a bold, dark pen or thin sharpie when sending notes and birthday cards. I often have to ask my husband to read me personal cards, especially if they are written in thin, pretty cursive. There’s something more intimate and special about reading a personal card silently on your own than having another person dictate it to you, so I love it wen I open a card and see clear, dark printed letters. Contrast is the key!
- Seek us out at parties and other social functions. My sister and I have talked about how we think we’d be a lot more outgoing, like our mom is, if we could actually spot people we know around town or at gatherings. My husband works at a large church, and sometimes I see clusters of people standing around chatting, and I am aware that I know some of them but can’t sort people out of the crowds to actually go up and talk to them. Occasionally I am able to see someone and approach them, but it’s never as smooth or friendly as I wish because my mind is busy worrying about whether there’s someone standing next to that person who I failed to see and greet. For the most party, I tend to plant myself in one place to try to scan the room. It is very frustrating and lonely just standing there by myself, so I am always relieved and grateful when someone comes up and embraces me in a hug or comes to chat. Some people even identify themselves “Hi Joy, it’s Jack!” This can be helpful, but it always makes me laugh because it seems like the people who think of doing this are the ones with really distinguishable, booming voices who I’d recognize from a mile away! Personal pet peeve: When someone sees me somewhere and later tells me about how they waved to me or saw me but didn’t take the time to make me aware of their presence audibly in the moment.
- Be there to listen. One of the themes I see repeatedly in messages from our readers is how thankful they are for specific family members and friends who are supportive and encouraging to them. I never receive comments stating how thankful they are for someone helping them walk through a dark theater, though I’m sure they are. But the assistance that seems to be most meaningful and therefore memorable to people is more intrinsic in nature. Since it’s a constantly changing condition, people’s levels of acceptance and emotions are also shifting. One person I surveyed siad, “Let me be mad on the days I need it and just agree with me when I say that life is unfair instead of trying to cheer me up.”
- Make it fun! This tip is for both family and those with RP (including myself!) We all take life a little too seriously sometimes. Life is a game and our challenges are meant to make the game a little more interesting and even meaningful. If something is awkward, go with it and be goofy together and laugh about it. Try to relax a little. Appreciate people’s efforts on both ends of the spectrum. If you took the time to read this on behalf of a loved one, they will really benefit from your efforts, so on behalf of all of us VIPs, thank you!
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So many of the tips resonated with me. I enjoyed the ” pet peeves” too.
Ha, thanks! Yeah, I felt a little rude writing the pet peeves since I knew certain family and friends would be reading! I like the name of your blog– it is an adventure! I’m going to check it out!
This is fantastic, Joy! Seriously fantastic. Thanks for expressing what so many of us struggle with!
Thanks so much, Luci! I really appreciate it, and I’m glad someone else relates!
This piece shows that you spent time really thinking about the best way to write this. I’d give it a 10! I loved it, especially the bit about crowds at church. For me, I love it when others quietly turn on as many lights as possible when I show up for a family get together. One of my favorite “moms” even whispered to me, “I thought of you when we put in these new bright lights”….It’s like the Sharpie notes. 🙂 Thanks so much for sharing.
Thanks Tracey! I’m hoping this will be helpful for people!
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Thanks so much for this! My husband has RP and I’ve gradually learned these things over the years. Wish I had this guide from the beginning! The tips are soo useful.
Thanks! So glad you found them useful. After living with someone with RP, you could probably come up with some tips of your own, huh?!
Hi Joy,
I thoroughly enjoyed reading this post. So many of your tips resonated with me, especially as it is things that I have tried to explain to my friends and family. You have managed to put into words the exact things I struggle with. The tip about visual clutter rang true for me. I am forever trying to explain to my parents the frustration I feel when they have moved things and i bump into them and end up with bruises or a bruised ego, as i think I know where everything is and which parts of a room to avoid. Thanks Joy 🙂
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