This blog post was written by Jill Jorgensen, whose sister Olivia is nonverbal, has cerebral palsy, and is visually impaired. You can read more about Jorgensen and her family on her blog, Little of This, Little of That.
I’ve been thinking about how to write this post for a while now, wanting to have this conversation without knowing how to start it. Then I realized that even if no conversation is started or had today, but the seed is planted and courage for a future day and conversation takes shape (hopefully with those not able to read this post), then my goal will have been accomplished.
I have been very blessed in my life, with many wonderful family members, each of whom I could go on about in a post dedicated solely to them and the gratitude I have that they are in my life. However, this one is about my youngest sister Olivia.
As many of you may know, Olivia has multiple disabilities; she has cerebral palsy, an intellectual disability, and is visually impaired. She is also non-verbal, meaning she cannot communicate verbally, though she does make sounds. Taking my sister places can be challenging because of the physical dependency she has for getting in and out of the car, or into her stroller. However, the most challenging part for me is emotional.
Regardless of the activity or chosen location, my sister ALWAYS gets stares. Always. I want to make it perfectly clear here: I UNDERSTAND. I am not mad or confused about why people look around to find the source of the loud vocal noise being made in the store. I don’t get the least bit offended when children or adults jump and then stare when my sister lets out a loud yell (usually just happy, but I understand that if you don’t know her, she sounds pissed). It’s what happens next that I would love to give people some insight into, to have the conversation about.
It seems to me like there are a million different articles about what NOT to do. “Phrases Parents of Autistic Children Wish You Would Stop Saying…” or “5 Things That Are Unhelpful and Why…” First of all, since when does telling anyone what NOT to do help them understand what TO do? Second of all, everyone is different. I could give you a list of things I wish people would say and do around my sister but there will always be someone who disagrees or wishes the opposite would happen. That’s because *SPOILER ALERT* everyone’s different. This includes people with disabilities and their families. I, personally, couldn’t care less if someone uses the word ‘retarded’ or ‘handicapped’ if their intent was kind and genuine when speaking about someone with disabilities. I know a lot of people who would passionately disagree with me on that. And that’s OK. I would just like to offer ONE perspective of someone with a family member who has both physical and intellectual disabilities, so that you at least have a starting point.
I have worked with adults, adolescents, and children with a wide range of disabilities, but one thing seems to remain the same: non-disabled individuals have a harder time interacting with disabled individuals the more they lack 3 things: eye contact, appropriate affect, verbal communication. If you have 2-3 of those, usually people don’t mind trying to interact with you. It’s ok that you can’t talk back if you can look at the person and smile while they chat with you. If your affect doesn’t match the situation, but you can make eye contact and speak, people might feel a little more uncomfortable yet they will still talk to you.
My sister can do none of those things. Therefore, to some people, it’s like she’s not a person.
Because she will continue rocking and shaking her toy when you talk to her, people act as if she cannot hear or does not understand they’re talking to her. Will it help if you say her name first so she knows you’re talking to her? Yes. After all, she is basically blind and not going to catch those eye contact cues. Is she going to know who someone is after one or two visits? Probably not. My sister takes a while to feel comfortable with new people/places so she might not smile or rock faster when you begin talking to her. Does this mean that she doesn’t enjoy your conversation or the attention? Absolutely not.
I recently took my sister to get a haircut from the same lady who has been cutting her hair for years now. I only take her about once a year, my stepmom takes her the rest of the time, so I get to see the difference in their relationship more pronounced. The first time I took Olivia to Sherrie, she did not smile, she rocked a lot (which makes the haircut extra fun, I assure you), and made anxious noises. All the while, Sherrie talked to her in a nice, sweet voice, using Olivia’s name frequently, and speaking directly to her. When I took Olivia last month to Sherrie, she was so happy to see Sherrie (so to speak). Liv still rocked a little bit, but it was much less and she had a huge smile on her face the whole time. She was not very loud and any noises she made were happy squeals.
I was completely blown away by how much my sister liked and seemed to genuinely know her hairdresser (which really goes to show, the salon is really the place for ANY girl). Let’s say my sister gets 4-5 haircuts a year, and has gone to Sherrie for 3 years (ballpark figure, I can’t recall how long), that’s still a total of about 300 minutes that Olivia has known her. Less than a school day, for crying out loud. Yet, my sister enjoys her presence and responds to her in a way I’ve only seen her do with immediate family.
What makes Sherrie different from others is that she has mastered what our immediate family has: the art of a one-sided conversation. Yes, it is an art, and no, I don’t expect people to magically have it. It is definitely a learned skill and very uncomfortable if you’re not used to it. Let’s go back to the people in public who look at my sister when she makes noises or see their children looking at her when she’s being loud. Instead of continued staring or worrying their children are being offensive and telling them not to look, here are some things that I LOVE to happen:
If saying something to someone when you know you won’t get a response is out of your comfort zone, pay a compliment. It requires no response, is friendly, and interactive. Yes, even if you’re not sure they’ll understand. Their caregiver will, and they will still understand your nice tone if nothing else.
Say Hello! Even if it’s just to the person’s caregiver or you’re not sure if the person can hear you, say hello. It makes people feel acknowledged in a good way and you have no idea how wonderful a quick smile and ‘Hi!’ can make someone feel after they’ve been stared at for the last 15 minutes like the social pariah.
Ask Questions! I LOVE when people ask questions about my sister because 1) that means they’ve approached us and are not just staring awkwardly, and 2) knowledge is power. If asking questions about my sister helps you and/or your child understand a little better so that the next time you see someone in wheelchair who’s rocking, my day has been made. Also, it gives me a chance to normalize her behavior and relate it to you. When kids ask why my sister’s rocking and I tell them, “That’s how she shows she’s happy”, they usually smile and look a little less scared of her.
Instead of insisting your child stop pointing and turn around, which feels like you’re saying “Pretend they aren’t there”, explain in a matter of fact way that she is disabled. “Some people’s brains work differently.” “Some people can’t walk, so they need a wheelchair.” None of these are offensive to me and the fact that you’re normalizing ‘the other’ by explaining about people, which includes my sister, makes me very grateful.
So the next time you see someone who appears to be physically and intellectually disabled, I encourage you to start working on your one-sided conversation skills. The tiny part of your day that may be uncomfortable can literally make someone else's day and help them and their family feel included in the community.