D: Hi all, and welcome to All Our Brave Hearts podcast! I am Danny Whitty.
T: And I am Tara Whitty, Danny's sister. So this podcast is about interdependence, told through our experiences as Danny, a nonspeaking autistic man with high support needs, and me, his sister and main communication partner and one of the main people in his support team. Danny communicates using Spelling to Communicate (S2C), so he spells out letter-by-letter his words on a laminate board (that's his preferred method). He will often read his words out loud himself; otherwise, I read for him. And for his prepared remarks, he often uses a text-to-speech voice which he's chosen to read his words out. And people who communicate the way that Danny does, or in similar ways, we call "spellers." Anything else we need to add?
D: I think that is it! Tara tell me about an example of interdependence from your life recently.
T: I'm going to say - there's a couple of big ones, and I'm not sure which one you're going to choose, so I think I'll choose the one that's less likely the one you'll choose (I'm so inarticulate!). I'm going to choose the Motormorphosis conference that was almost 2 weeks ago.
So this is a big conference hosted by the International Association for Spelling as Communication (I-ASC). So each year we gather as spellers, practitioners, researchers, families, interested allies and members of the public, for this really amazing conference where all sorts of issues that are important and interesting to this community are presented on, discussed, there are panels and lots of great social events. And this year there were 143 registered nonspeakers, which is amazing!
And it's such a beautiful example of interdependence, because you have all these different groups of people coming together and working toward a better future for nonspeaking individuals. And everybody is benefitting from it. Everyone gains from these vibrant friendships between disabled folks and nondisabled folks, between formally trained experts and people who are experts from their lived experience. There are all sorts of ages of spellers - so Danny, you're one of the older spellers, and you're a role model for the younger spellers, and the younger spellers really inspire you to keep doing the work you do to make sure that the world is a better place for them as they grow up.
It was also really special how many people came up to you, and to us, to say how much they appreciated your work, how they appreciated the podcast and how much they've enjoyed it and how it's helped them. And that also helps us, right? We get to feel like the effort we're putting into this is having a positive impact in the way that we're hoping.
D: Red letterboard!
T: Am I going on too long?
D: No, this is perfect.
T: What did you want to add, if anything?
D: It was fantastic!
T: And the last thing I'll say about it: it's such an inclusive community where I felt so at ease that we were surrounded by people who knew you and me, and who cared about you, Danny. And I felt that you were surrounded by people who I could trust to treat you with respect, to help you if you needed something and I wasn't around, and it was a really beautiful vision of what more of society could be.
I feel like I did not do it justice - I feel like I was so inarticulate - but hopefully I communicated some of that feeling of beautiful interdependence.
D: Totally. That is a great example!
T: I hope I didn't scoop the one that you wanted to say, but I suspected that you had another example from your life that is more recent that you wanted to share.
D: You are right! Mine is my birthday party.
T: By the way, as we're recording this, it is Danny's birthday. Happy Birthday, Danny! 39 years old. 39 and feelin' fine.
D: Totally. I am loving my age already. I am so enjoying my thirties. I am so feeling confident in myself and learning new things and skills all the time.
T: That's awesome, Danny. That's the perfect way to move through this world even as the years keep piling up.
D: Totally. These past four years have been so full.
T: And for those who don't know, we started spelling together - communicating fluently together - just over four years ago.
D: It has been a beautiful journey. So, as I was saying before someone interrupted me...
T: [laughs] sorry!
D: ...this birthday party was a great example of interdependence. It was my first party for my birthday where the guests were my speller friends. It was so fantastic to be surrounded by friends who can truly relate to my disability and they are all such amazing people. And for my friend James, it was a dream come true to host a party for our friends.
T: So that was a very nice example of interdependence. He got to realize a dream, and in doing so helped you realize a dream, and so many of your friends who were there were just so happy to have a great party to go to. And that included the families and your nonspeller friends who attended, too. It was a beautiful event for everybody.
D: Totally. And it was a pool party on a hot summer day so that was perfect!
T: It was really nice to get to be in the water on such a toasty day.
D: And we have taken so long to do that question, so let's dive in!
T: Alright, let's dive in.
D: Go to text-to-speech.
I want to chat about the idea of dignity of risk. It is fresh on my mind because I recently tried some new steps toward autonomy and it is a reminder to me and my support team that it is so important to allow for trying new and challenging things. Dignity of risk was a revelation to me when I first heard this term at the Motormorphosis conference two years ago.
Tara can you explain?
T: Yeah, it was a revelation for me, too. I believe that Motormorphosis, as well, was my first time hearing the term "dignity of risk." And of course, as soon as the speaker said it, it made complete sense to me. But it shows the privilege I've had in my life, as a non-disabled person, that I've just been able to experience the dignity of risk - which has helped me grow as a person in very substantial ways, those risks I took, the mistakes I made, the failures I ran into and learned from and recovered from, and also the risks I took that were successful and paid off - those have all been so central to me being the person that I am. And I've gone through my life without having to label that as anything. That was just life. And it was really important for me to hear that term as someone on your support team, Danny, and of course as your older sister, where there are definitely some parental vibes. It was really important for me to hear that idea.
I'm going read an excerpt from an article on the dignity of risk from 1972, by Robert Perske. On Wikipedia, it said that this was the article where the concept of dignity of risk was first articulated. I'm not going to read the title aloud, because it is quite outdated in a potentially offensive way, but the content of the excerpt seems to me to hold up. So here I go:
Overprotection may appear on the surface to be kind, but it can be really evil. An oversupply can smother people emotionally, squeeze the life out of their hopes and expectations, and strip them of their dignity. Overprotection can keep people from becoming all they could become. Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try. Persons with special needs need these chances, too. Of course, we are talking about prudent risks. People should not be expected to blindly face challenges that, without a doubt, will explode in their faces. Knowing which chances are prudent and which are not – this is a new skill that needs to be acquired. On the other hand, a risk is really only when it is not known beforehand whether a person can succeed. The real world is not always safe, secure, and predictable... Every day we face the possibility of being thrown into situations where we will have to risk everything … In the past, we found clever ways to build avoidance of risk into the lives of persons living with disabilities. Now we must work equally hard to help find the proper amount of risk these people have the right to take. We have learned that there can be healthy development in risk taking and there can be crippling indignity in safety!
There is definitely some outdated language in there, but I think that the point here is that everybody has the right (and should be able to access that right) to make their own decisions, to not always be wrapped in bubble wrap, so to speak; and to be free to choose to take risks and to learn from their failures and successes.
And you might have heard that Danny is not sitting next to me, he's sitting on the couch because he needed a little bit of a break, but he can still hear everything I'm saying. Danny, would you like to come back and let me know what you think of this excerpt?
D: I love that excerpt. It is a good overview.
D: So this is an exciting but also scary idea. For me, being able to take risks or be exposed to possible risks is profoundly empowering. It is something that most nondisabled people get to experience and learn from as they grow up. It is an important part of development and growth. And it is a critically important component of autonomy.
Tara and I practiced it in small ways last weekend at this year's Motormorphosis. It was so empowering even though it was relatively little things. I think it was good to advocate for it to remind Tara that I want to keep working toward more autonomy.
Tara please share what we did.
T: So this came up because of the structure of Motormorphosis, in a way, and also just because of the logistics of the two of us traveling across the country by ourselves and needing a little time to adjust to a new time zone and get over the fatigue of travel.
So the conference has 2 main days, but before those days, there is a day of a S2C practitioners' conference (and I am a practitioner) and there is also an afternoon of events hosted by the Spellers & Allies Advocacy Network, which Danny is part of. So last year, it was decided that I would not go to any of the practitioners' conference. For starters, my priority is to be Danny's Communication Regulation Partner at the Spellers & Allies events. And second, Danny and I talked about it and he really felt that he really needed a support person with him to just ease into our first full day on the east coast, to sort through getting up, getting breakfast, getting dressed - all that stuff. So I did not attend any of the practitioners' conference - we were together the whole first day last year.
This year, Danny said that he wanted me to go to the morning of the practitioners' conference because he really wanted to try being left to his own devices in the hotel room for that morning. And of course, my immediate response in my head as the overprotective sister, was very much full of worry: "Doesn't it seem like I'd just be abandoning you? Wouldn't you be bored? What if you had to leave the hotel room and you didn't know where to go? How would you navigate in the hotel? What if you needed help? You wouldn't know how to call me!" All these worries cascaded down.
Danny was able to be like, "Hey, I know the hotel - we were there last year. I am pretty comfortable in a hotel room. I'll probably just be resting in bed anyway. You can come up every hour and check on me."
And what I had to realize, also, was that we were at a big conference full of practitioners and families who know nonspeakers very well. So there was a good chance that if he ended up just wandering in a hallway, someone who knew him, or at least someone who knew how to support a nonspeaking autistic individual, would be around, and they would know how to contact me.
So we decided to give it a try, and it was great. Danny just really slept the whole time! So that's a pretty low-stakes dignity of risk situation, but it was a good one for both of us. And it really inspired me to think about how we could build Danny's autonomy in other ways while we were at the hotel.
One example is I got him to lead the way every time we went from the hotel room down to the conference rooms or to the lobby to hang out with people or to the gym or whatever, I had him take the hotel key card and put it in his pocket, and I had him lead the way to the elevators, press the elevator button, assess whether the floor where the elevator stopped was the floor we needed to get off at, and then get off there. And then doing the whole thing in reverse, including navigating to our room, knowing how to put the key card up to the receiver thing, and get in.
With practice, it was really cool to see how much confidence he gained along the way, and how I was able to resist giving him cues that he initially thought he needed, but it turned out he really didn't. So every time he'd turn around to look at me questioningly, like "is this the right way to the elevators?" I'd just look down to the ground and he would have to decide which way he was going to walk. And he did great!
I also tried to let him be on his own a little more, like in the lobby when he just needed downtime. I would always let him know where I was going to be - he'd always know where to find me - but I would just have him hang out on his own. And then I'd get texts from people, like "Hey, I just found Danny, he's just hanging out in the lobby." It was a good situation to be in because we were surrounded by people who knew Danny, who cared about Danny, and who knew how to get in touch with me.
Danny, I don't know if you want to add anything to that. Do you want to bring your body back here? Hope you're enjoying the couch!
D: I loved it. It was so good for my confidence. I appreciated you letting me figure things out on my own.
T: Yeah, it again was a good reminder for me to let you figure more things out on your own, more often. But it is a hard balance, right? I don't want to feel like I'm abandoning or neglecting him.
Another thing was, at one point, there was a meeting between some of the nonspeaking and practitioner leaders. During that lunch break, I just let Danny sit with one of the practitioners and just have his own time with her without me hovering over him with the letterboard at the ready. He was already pretty tired from three-and-a-half days of pretty intensive spelling, and he often doesn't spell during meals anyway, so I thought: "Oh! He can have a meal with someone else, and I don't have to be right next to him." So that was also a good exercise for both of us.
D: Good point! I loved that time without you, as rude as that sounds.
T: No, I get it.
D: It was so nice to feel like I did not need constant support.
I am so realizing that I should have given her more notice so we could have prepared more. But still I managed to build confidence and skills so next time I am in that situation I can continue practicing.
This reminds me of my first day on my own at the beach. Well, I wasn't really on my own. Tara was there but out surfing. This was totally my own idea. Tara please share.
T: Yeah, I don't remember when this was... maybe a few years ago. So I was living with my mom and Danny a little bit inland, but I also love to surf, and Danny loves going to the coast. So we were in a situation where I did not feel comfortable having Danny just be on his own by the ocean, so if he wanted to go to the ocean, I would drive him out there, about a 30- to 40-minute drive, and then I'd drive him back. And then if I wanted to surf, I'd have to make that trip twice in a day... you know, I just felt like I was not able to get in the water for myself as much as I wanted to.
But I never complained about this to you, Danny. But you observed this. And I think you also wanted to branch out and try something new for yourself, as well.
So he came up with this idea: "Tara, let's just try having me be on the beach by myself, and you surf." And I was again, overprotective older sister, thinking of all the things that could go wrong. So I needed some convincing, like "Danny, you have to promise me that you're okay with this. I don't want this to be from you feeling guilty about the time I spend bringing you to the beach. I don't want you to feel like you're a burden. I want this to be something that you actually want for yourself."
D: Haha, you were so worried.
T: I was worried. It's one of my great skills. And even to the day when we were down at the beach, setting up his things, I was checking in with him constantly on the letterboard: "Are you sure? Are you sure you want to do this?" And he finally had to kick me off the beach. He was like, "Tara, just get out there! Get out there already! I'll be fine."
It definitely helped that you were wearing pretty bold colors that I could see from out there on the water.
D: You were so anxious about it! I could see you almost constantly looking back at the beach for me. You are such a sister bear! But I loved being on my own. I never get to be on my own in public. It was so freeing to be able to hang out independently. It was thrilling!
All that being said, we were careful and planned ahead. This beach is safe in that it is down stairs at the base of reinforced cliffs. So I am at pretty much no risk of wandering into traffic. I am familiar with this beach from many visits with my sisters. The tide was low so I had plenty of space to walk around. The waves were mellow near me so I could even wade in easily and safely. And Tara set up my beach station, with a blanket and beach chair and snacks and water, as well as a cooking magazine for me to read. It helped to have a defined spot to come back to.
Since then, I have had many more beach days like that. It is still one of my favorite things to do.
T: And that's also carried over to other times when we're at the beach with the family, and you request time to be by yourself and go for long walks, and that's worked out pretty well. There's one time went you went out much farther when we expected, and you and I were running late for something, and I had to run like a mile to catch up to you! And another time, I was sent by our mom and sister to spy on you to see "is he turning around? where is he?" And I was supposed to make myself difficult to see because we didn't want you to feel like you were being supervised. But then right as I was setting out on my mission, you were turning around me, and you totally saw me!
But other than that, we've been able to be comfortable with you going for your own walks on the beach, having pre-set turnaround points, and trusting that you're going to come back.
What else... I think a lot of the ways in which we've tried to implement dignity of risk really relates to the ocean. So even getting you into ocean sports to begin with, prior to you having communication, your body language communicated a real discomfort with even little waves.
And then, when you were able to communicate, you said, "Yes, of course, I'm a little nervous about the waves. I need you to coach my body through being nervous and help me gain the skills so I'm more comfortable in the ocean."
So the snorkeling, the ocean swimming, the stand-up paddleboarding - those are all things that work with that idea that you are allowed to choose to put yourself in a situation that makes you a little uncomfortable. I or our sister are there to provide you with necessary support, but you are still taking a leap of faith - you're putting yourself in a new situation, pushing yourself, and learning from it.
With regard to these ocean activities, I do want to clarify that I have a fair amount of experience and comfort with those activities, and our sister is also fairly competent in the ocean, and that is the main reason why we felt like this was an acceptable amount of risk for Danny to be taking. It's certainly not risk-free, but the people with him are competent and able to help ensure his safety.
And then another arena would be in the kitchen. It took so long to convince our mom to let you use sharp knives to chop things. And now you're able to do so much as she's gotten more and more used to the idea that "he can do a lot - he can do it very capably and safely." So those are some other examples of what we've done.
D: Totally great examples.
I also would say that being a public account on social media was a risk. My sisters were very careful in advising me whether to post publicly. They shared the reality that social media can be harsh and full of misinformation and conflict. But they respected that I felt driven to share my story and ideas with the world. So they let me make the decision to have public Facebook and Instagram accounts, while monitoring them for toxic behavior.
For me, it was intimidating to put myself out there. I had been without a voice for most of my life. My new voice was very precious to me. I had no experience sharing my thoughts. And many of my interactions in public had hurt me. So I had to grant myself courage, too, and allow myself the dignity of risk.
T: And that also translates to other things that is Danny is taking bigger... I wouldn't necessarily call them risks, but putting himself in situations where the idea of failure is extremely daunting. So, in his career, in his ambitions as a writer and public presenter - with those big dreams comes the possibility of not attaining those dreams. And that fear of failure is hard for anyone. And I am very sensitive to the fact that Danny, you never really had the option to cultivate dealing with this as a skill.
Do you want to come over here, dude?
D: Yes, red letterboard. I get it. It has been hard to emotionally process the possibility of failure. I never had the chance to learn that.
I think this is a long episode, but I want to add that it is hard to calibrate this dignity of risk. It is difficult to willingly put oneself or one's loved one in a possibly risky situation. I know it is tough for families, especially because they feel and essentially are responsible for the safety of their disabled loved one. That is an emotionally heavy reality for them. And I don't advocate for recklessness. Dignity of risk for me is challenging myself and my team in the pursuit of a more fulfilling life for me. This involves being thoughtful and prepared. It is strategic and careful. That might look very different for folks who aren't quiet as high support needs as me. And the risks I can take look different from what might be realistic for someone else. This is an individualized journey.
T: Yes, I am - perhaps it's an oldest daughter thing? - I am an expert at finding things to be anxious about and visualizing every possible thing that could go wrong. And on the one hand, that has helped me be very prepared, but on the other hand, it has been very counterproductive to my well-being! As someone on Danny's support team, this is a tendency that I feel an added need to balance, to make a little more balanced, so I'm not curtailing his opportunities by my fretfulness.
But I can really get in my head imagining Danny in a vulnerable situation, and there's a tenderness I feel toward him as my little brother, as someone who I am partially responsible for. And I can imagine all sorts of ways in which there might be a situation where Danny and I have practiced so much and are very confident that, say, he can be on his own in a hotel, he can take public transportation somewhere, he can take a Lyft on his own as long as he has a cell phone - there's things we can work toward. I can imagine all sorts of ways in which unanticipated things pop up and things go wrong, and Danny has not practiced the adaptability needed in those situations.
So that's difficult for me to deal with in my head. I'm very lucky that Danny is able to communicate to me and to everyone in his support team the levels of risk that he is willing and even wanting to accept into his life. I will also say that there have been times when Danny's been faced with unanticipated, urgent situations - even emergencies - and he has really risen to the occasion in ways that I would not have predicted. Like he has shown himself to be very capable, in some of these difficult situations, in getting his body to do what is needed even if we haven't practiced it. So it's tricky. That's the takeaway, Danny: it's tricky.
I mean, it is difficult and will always be difficult for families and support teams to find a place where that dignity of risk and the duty of care and preparation is balanced. And I will always feel like you're so very precious to me. I will always feel a very special tenderness and responsibility toward you. Let's just say, this is probably more a process for the support team than it is for the disabled individual.
D: Totally. I am a grown person and I deserve the chance to grow through risks that I choose. Thank you all for listening! This is an important topic that I hope you all will think about more.
T: So, as ever: thank you for listening and/or reading. Please do leave comments on Substack - we love reading your comments - and leave reviews, like, subscribe, share, etc. on whatever platform you're using to access this podcast. It really does help with visibility. We think it's really important that more people who don't have direct experience with disability are able to learn from our experiences and the wide-ranging ties that it has to interdependence, which is important for all of humanity.
D: I absolutely agree!
T: Oh! And if you feel so moved, you can donate to Danny's Ko-Fi account to support his unpaid advocacy work, including this podcast. Yeah, I think that's it. We might sound a little disjointed and distracted today, because it is Danny's birthday and we are all aflutter with plans for later. So thanks again for being with us, and we will see you next episode in about 2 weeks!
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