One of the things I notice when I am in my #wheelchair  is that many adults have difficulty knowing exactly what to say or how to act with someone who is in a wheelchair. Sometimes I notice inadvertent, side-glances; people who don’t glance directly at me, but will furtively look at me and then look away, as though they’re afraid of being caught staring.

I think that it is important to note that while you may be curious, some good general tips are as follows.  

Tip 1. If you are curious and want to look at my wheelchair, please openly look at me, as you would look at any other able-bodied adult, and make eye contact. This is much less hurtful to me than when people pretend to be looking at something else while sneaking side-glances at me and my wheelchair.

I think I know why they do this; it is an ingrained cultural concept that we should not stare at others who are different. However, doing that kind of thing makes me feel like I am some kind of bizarre person, and increases my feeling of isolation.

People often have a natural desire to look at a wheelchair. It’s ok. A wheelchair is something out of the ordinary. However, it is immensely more painful to me if you give me a couple of sidelong glances and then move on without ever saying hello or acknowledging me. You don’t have to talk to me, but please do nod or smile as you would do to a normal person. It restores my feeling of humanity and equality.

Tip 2. If you have questions, ask, in a polite and respectful manner. I am usually very happy to answer questions about my condition or why I am in a wheelchair. I know I make people curious, especially because I am young. Many people don’t understand my disease, lupus, and want to know why I am in a wheelchair, especially when I don’t have a visible cast or broken bone. Politely asking is not offensive; ignoring and staring covertly is.

Tip 3. If you have small children, and they ask you something like, “Mamma, why is that girl in a wheelchair?” The best way to respond is probably to say something like “I don’t know; let’s ask her.” I have heard parents hush children up with a “Stop it, that question isn’t appropriate,” or they may say, “We don’t ask people those sorts of things. It’s rude.” Children have a natural curiosity about the way the world functions. They want to know. And by allowing them to approach and talk to me, you are increasing their tolerance and acceptance for people with disabilities. Plus, the majority of people in wheelchairs are happy to interact with curious children. They ask the questions that the majority of adults are thinking, but are afraid to ask.

Tip 4. When talking to me, don’t feel you need to kneel down or get on my level to talk with me face to face. While I understand that some people do that, thinking that it allows them to better make eye contact with me, but on the whole, it comes across as condescending. I know I’m in a wheelchair and I know that you’re going to be looking down at me. Although I am 5’11” when I stand up, in the wheelchair, I’m very short. And that’s ok. Just talk to me as you’d talk to me if I stood up and was facing you. We’re still on the same conversational level even if you tower above me. At the same time, don’t hug a wheelchair user if you’re just meeting them for the same time, unless you would hug a casual acquaintance in the same situation; make sure to treat those in a wheelchair with the same respect for physical distance you’d treat those who were able bodied. 

Tip 5. Offering help to a wheelchair user in obvious distress is ok.  For example, yesterday my motorized wheelchair went slightly off the road and got stuck in a patch of mud; I couldn’t get it out of the mud without someone’s help. Sometimes people walk on by, and look sympathetic, but aren’t sure what to say for fear of offense. A kind, “can I help you?” or “Can I be of any assistance?” can sometimes be greatly appreciated. At the same time, if the wheelchair user says ‘no, I’m fine,” it’s best to respect his/her preference. 

Tip 6. Not everyone in a wheelchair is paralyzed. But people usually assume that is why you would use one. Illness and frailty often make wheelchair use necessary, and it can be just as necessary as for those who cannot move their limbs at all. The reason I use a wheelchair is because of a neurocardiogenic syncopy issue, which is a miscommunication between my brain and my heart. I pass out when I stand for periods of time which can be as short as 30 seconds long. I know this is difficult to understand, but think of it in terms of computers: I blue-screen if I stand too long. 

Tip 7. Dogs sometimes freak out when they see people in wheelchairs. Even normally well behaved dogs. This is due to the fact that dogs’ minds don’t work like our own; they don’t see a person sitting in a chair with wheels; they see a strange creature, half human, half wheelchair hybrid. So be prepared that your normally calm dog who’s not used to seeing wheelchairs may turn suddenly upset when they see a person using one. Steady, calm your dog, and rein them in. It’s not a training failure on your part; it’s natural dog behavior and a part of how they perceive the world. If your dog will regularly come into contact with people who are in wheelchairs (for example, a neighbor or relative) it would be wise to train them to get used to a wheelchair. They see the world differently than we do. My dog, Sirius, is fully trained to adjust to the wheelchair. I’ve attached a picture of him and me interacting while I use my motorized wheelchair. 

If you have further questions about this, feel free to leave them in the comments- or reshare. I’m sure other folk who live and work in wheelchairs may have other feedback to add. The point I’m trying to express is etiquette; and these are the thoughts that often go through my mind when navigating stores, museums, or when I’m out in public. 

BTW, I am not, and cannot be a spokesperson for all wheelchair users. We are all unique and we all have our own preferences, as do all individuals. These are some generalities, and some are specific to me, but some other people who use wheelchairs or who are disabled may feel differently. This is why it is important to ask each person how they feel and what they would prefer. 

The reason I speak up with these tips is because I suspect a majority of them are across the board true for many disabled populations; we often get ignored rather than asked what we would like, because people are many times afraid to speak to us openly. Don’t be afraid of offense. Discussing disability increases understanding and tolerance.