We’ve invited listeners to send in your questions about disability-related topics and etiquette. Today we are kicking off a special 3-part Q&A series with Jenny Hill, a speaker and author who lives with mild spastic cerebral palsy. On this week’s episode, Jenny is answering questions about painful situations—being stared at and falling in public—offering ways to transform these situations into positive learning opportunities. Hear how you can navigate uncomfortable circumstances with compassion as you see each person as whole, for more than their disability. And as you recognize that everyone is multi-dimensional, Jenny is sharing how you can tactfully talk with someone about their disability, especially in the early stages of a friendship.
“Looking at another person can be a very hurtful experience or a very welcoming, affirming experience. We have a choice of what role we want to play in that.”
During our third season of the Joni and Friends Ministry Podcast, we’ve invited listeners to send in your questions about disability-related topics and etiquette. Today we are kicking off a special 3-part Q&A series with Jenny Hill who joined us last season to talk about disability and belonging. Jenny is a speaker and author, she holds a doctorate in Education, and lives with mild spastic cerebral palsy.
On this week’s episode, Jenny is answering questions about painful situations—being stared at and falling in public—offering ways to transform these situations into positive learning opportunities. Hear how you can navigate uncomfortable circumstances with compassion as you see each person as whole, for more than their disability. And as you recognize that everyone is multi-dimensional, Jenny is sharing how you can tactfully talk with someone about their disability, especially in the early stages of a friendship.
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*Joni and Friends envisions a world where every person with a disability finds hope, dignity, and their place in the body of Christ. Join us in answering the call in Luke 14:21-23... until his house is full!
Founded by author and international disability advocate Joni Eareckson Tada, the ministry provides Christ-centered care that serves needs and transforms hearts through Joni's House, Wheels for the World, and Retreats and Getaways. Joni and Friends also equips individuals and churches with disability ministry training and provides higher education courses and internships through the Christian Institute on Disability. Find more encouragement through Joni's radio podcast, daily devotional, or by following us on Facebook, Instagram, and YouTube.
Crystal Keating:
I'm Crystal Keating and this is the Joni and Friends Ministry Podcast. Each week we're bringing you real conversations about disability and finding hope through hardship and sharing practical ways that you can include people living with disability in your church and community. Be sure to subscribe wherever you listen to podcasts or find us at joniandfriends.org/podcast.
Today, I'm joined again by my friend, Jenny Hill, who is an author and speaker, holds a doctorate in education, and lives with cerebral palsy. Welcome to the podcast, Jenny.
Jenny Hill:
Thank you, Crystal. Fun to be here.
Crystal Keating:
It is fun to have you back. And last year we had an incredible conversation about disability and belonging, such a great topic. So listeners, if you missed that episode, be sure to scroll back to season two, episode 38, to be specific in October 2020 and download that show. Jenny, today you're here to talk more about your own experience as a woman who lives with cerebral palsy, especially when it comes to being stared at, losing your balance in public, and how to tactfully talk about your disability. So we're going to have a really interesting conversation. I just know.
So let's begin focusing in on that uncomfortable feeling you get when you know someone is looking at you intently, staring at you, has that ever happened to you?
Jenny Hill:
I would love to tell you that it has not, but that's not the case. And the thing is, sometimes it happens at such random times. I don't think I'm ever expecting humans to behave in that way, but all of a sudden, you'll be walking into the grocery store and, "Oh, that person is looking at me right now." Okay. I think it's possible that some people are just curious, but often when I find that somebody's staring at me, I feel like I'm being appraised. Like somebody is giving me a head to toe look and they're assigning value to me. And it might not be as much value as I would like.
Crystal Keating:
And it kind of says, at least for me, I'm like, what are they looking at? What are they thinking? They don't know me. I know me, but how are they sizing me up? Are they sizing me up? Or maybe, I don't know. What thoughts go through your mind?
Jenny Hill:
Well, all of those that you just mentioned. But I do wonder like, well, this is kind of an odd situation, but I actually had a recent surgery in which my Achilles tendon was lengthened. And so I walk a little bit cleaner than I used to. And shortly after that I was going into a public space and somebody really glanced at me that I didn't know, but I wanted to almost say to them, "Don't I walk so much better? Aren't you so impressed? I can't get over it either."
But no, I'm actually curious. What are you thinking? I have mild cerebral palsy, so I wonder if they're familiar with it. Do they think that it's also mild as well? Do they not know what they're looking at? Do they even know that I see them? How many more people wonder about me, but they're less rude? And I don't know the answers to these things. But Crystal, it has sent me into some deep reflection because it's brought some awareness to me about how I view other people.
And we all see other people throughout our days and we have a choice. We can stare at people and look them up and down and assign value, or we can engage in some intentional practices where we look people in the eyes, we make eye contact. We smile. We say hello. Maybe we give them a compliment. And I think that looking at another person, there's kind of two ways that that can go. It can be a very hurtful experience or it can be a very affirming, welcoming experience. And I think you and I have a choice of what role we want to play in that.
Crystal Keating:
Well, what comes to mind is the verse that talks about how man looks at the outside, he looks at the physical, but God looks at the heart. And so may God help us be people who really see humans, and friends, and strangers as God sees them with a heart of love, and compassion, and interest in knowing who they are. Right? And that's kind of awkward. Like if you're in Trader Joe's, I mean, you're not going to be like, who are you? But it's a attitude, right?
Jenny Hill:
Yes. And I think that that's the poverty of being stared at. In that moment, you realize, like there's so much more to me. I know you see how I move and you have some curiosities and wonderings about that, but I just wish you knew there were so many more dimensions to me. Because sometimes it can feel like you're seen, but your soul is missed. And I think the invitation in that is for us to do exactly what you said, to love people for who they are, their whole person. And that takes time.
Crystal Keating:
Well, may God grant us that attitude, no matter if we're at Target or wherever, we are to just have that kind of posture towards others. Well, let's transition to sort of a different experience. I would say maybe a painful experience, not just emotionally, but probably physically, and that is falling in public. So Jenny, as you live with mild cerebral palsy, your mobility and balance isn't always as you wished it might be, although it's improving. So that's good to hear. But you've shared with me that you have fallen in public, not just once, but several times. What's that been like you?
Jenny Hill:
Those are not my happiest days, Crystal.
Crystal Keating:
No, I would imagine not.
Jenny Hill:
They're not. Well, if it happens in a professional setting, that's very hard for me because I feel like it's not the most professional action, but really what I feel almost Crystal, is kind of a sense of betrayal. Like I didn't will my body to fall in that moment. It fell anyway without my permission, without me understanding that that's what was going to happen. And the most helpful thing has been for me then to get back up. Because in those moments, I feel like I can regain that lost sense of control and kind of pick myself up and keep going. So I want to say to our listeners out there, if you see somebody fall in public, the very kind and socially polite thing to do is to say, "Can I help you up?" And you should do that. Be prepared that somebody might say, "Thank you very much, but I've got it."
And I think the reason for that is just for me, it helps me kind of gain a sense of control. I didn't really give permission to fall down, but I am going to use my self-control to stand back up again. But it feels public is what it feels like. And I also feel like you fall, and people ask, "How are you?" But I don't think they fall at the same regularity that I do. And it's just like, I don't think you understand. This wasn't just a one-time thing five years ago. It's something that I have to deal with. So one thing that I've done is actually text a friend after I fall. And I just say, I fell today, and I want to share that with you.
Crystal Keating:
What does your friend say back?
Jenny Hill:
That's a great question. I mean, aside from the, "Are you okay?" They say, I'm sorry.
Crystal Keating:
It's affirming, acknowledging.
Jenny Hill:
Yes. This little loss happened today, and I acknowledged that with you that that happened.
Crystal Keating:
Yeah. Yeah. So I'm curious to know what's happening just physically when you fall, is it that you become weak or what part of cerebral palsy is impacting you not walking the way you wish you would in that moment?
Jenny Hill:
That's a really good question. I think...
Crystal Keating:
Not that you know every time, I mean but...
Jenny Hill:
Right. But I think in general, I mean, every person would fall in certain scenarios. Right. Ice, maybe an uneven terrain.
Crystal Keating:
Right.
Jenny Hill:
Tripping over something.
Crystal Keating:
Sure.
Jenny Hill:
But I think with CP, your balance is impacted. And so it takes less of a variant for you to trip and fall. Or where somebody else might stumble, I'll actually fall over because I can't right myself in the same way you can.
Crystal Keating:
You talk about falling and someone coming over to say, "May I help you?" And you in that moment, appreciative of their offer and yet wanting to be independent and get yourself back up. And I've heard that some of my friends with disabilities will say, I want to regain and maintain as much independence as I can. And so it's not that I dislike their help. I just want to be able to stand if I can. Because it's still something I can do. Is that kind of the sense that you have?
Jenny Hill:
Yes. I didn't get to choose to fall down, but I get to choose when and how I stand up.
Crystal Keating:
Yeah.
Jenny Hill:
Yeah. And as much as I can do it myself, I'd like to. There are situations where I've fallen, where I've needed help because I can't get up on my own. That doesn't happen very often, but it has happened. Yeah. I guess I feel a sense of agency by being able to get up myself.
Crystal Keating:
And I think for those of us in helper roles, that's important for us to recognize the etiquette of saying, "Can I help you? Are you okay?" And to be ready for whatever answer may come. But to again, it's like when you see people seeing that with that heart of compassion and love.
Jenny Hill:
One thing that might be helpful for somebody who witnesses a fall or is with somebody who falls and maybe that person has asked for help, maybe they haven't, whatever the outcome, actually checking in with them the next day, I think is very meaningful. Because sometimes it takes 24 hours for bruises to show up or you're sore in ways you didn't realize. And so that person is just showing their care by just checking in, sending a text, how are you doing today? I think that that can show some mindfulness.
Crystal Keating:
Yeah, that's really good. And that idea, like I remember, and this was...
Jenny Hill:
Yes.
Crystal Keating:
This was painful probably in a couple of ways. So Jenny, I want to ask you one more question about etiquette as we close our time together and how to have a genuine friendship with someone who has a disability. What's a tactful way, especially as you're beginning a friendship to bring up the person's disability? What would be your opinion on that?
Jenny Hill:
My opinion on that would be to not make it the very first question that comes out of your mouth.
Crystal Keating:
That's good. I hear a theme here. Get to know the person. They are more than their disability, right?
Jenny Hill:
Yeah. Yeah. Well, we have that phrase, right, person first language that always encourages us to use phrases like person who uses a wheelchair, person with a disability. But I think the meaning behind that can go even further. That we should see people, not just people with disabilities, but all people as whole people. And I don't imagine that we would generally go up to anybody we didn't know and start grilling them about health issues, whether we could see them or not. I mean, it just doesn't seem like a logical way to go about things. I would really encourage someone to approach friendship with somebody with a disability, the same way they would with anyone else. Get to know them, ask them about their interests to try to find those common areas of interest, shared experiences that you've maybe had, asked good questions. And then I think after you've gotten to know the person, you've maybe spent some time together, then I think you can ask about it.
And I think you can realize either that person would like to share that information with you or they wouldn't. It is their own personal health information. It is a personal question and maybe they'd like to share it and maybe they wouldn't. And I think you can let that person lead on that. You could also perhaps share a personal piece of information about yourself before you ask that of somebody else. I think that might open up some conversation.
It's also been helpful for me to hear, some of my close friends tell me that it was helpful when I started blogging and talking about disability because they learned a lot about me that I never shared with them before. And I think there were ways that they could be loving that they wouldn't have known about. Small things like having a chair available so that when you come into their house you can sit down and take off your shoes. Making sure to just grab your hand when it's icy so that you don't slip and fall. Small little things. Right? But that comes in knowing a person well. And so I think there is a value to sharing about the disability, but I think it needs to come into its own timing. And I think the person with the disability needs to be the driver of that conversation.
Crystal Keating:
Yeah. I mean, I just can't reiterate enough what you said. For those of us in a relationship and a friendship with someone with disability, disclose things about yourself, share about who you are. That's a great way just to build any kind of friendship, but also to give a platform to engage about the deep things about who we are, our faith, things that we enjoy, as we feel safe. Because in a good friendship, then there's that pathway to open up more opportunities about just the things that are important to you. I mean, you and I have talked about some deep things and through that is talking about life with cerebral palsy. It's just part of everyday interaction. And so that's definitely come through. Jenny, it's always fun to talk to you. Thanks so much for joining us on the podcast today to talk about these important topics. Appreciate you.
Jenny Hill:
You're welcome Crystal. It's my pleasure.
Crystal Keating:
Thank you for listening today. If you've been inspired, please send me a message or leave a five-star review on your favorite app. That's a great way to help other people find encouragement from these conversations. And to get our next episode automatically, subscribe wherever you listen to podcasts. I'm Crystal Keating and thank you for listening to the Joni and Friends Ministry Podcast.
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