My goodness, I am so touched by how many have liked and commented on and messaged about and shared my last post on Instagram and Facebook! Over 650 on Instagram. And now over 2000 followers on Instagram and 1500+ on Facebook. Wow. I am so amazed that you care about what I have to say. After decades without communication, and also being ignored by educators and society in general, this is an unfathomable shift for me.
I am so wonderfully surprised by the kind and interested welcome I have had since starting to share about my journey on social media. I know that social media can be a place of conflict and trolling and awful rhetoric, and that nuance and authenticity are often ignored. My sisters advised me of this when I was deciding how to best share my story. And I know it is entirely possible that skeptics of my communication method might one day crash this party. But I am mentally prepared for that and other challenges.
What I hadn’t fully anticipated was the magnitude of positive feedback! I know my reach is modest compared to major influencers, but I am so amazed that even a fraction of you are following me. I feel a sense of responsibility to represent my peers, and to also foster a sense of empathy and mindfulness and thoughtful awareness toward the diversity of nonspeaker experiences. And of course the story I can best tell is mine alone. So I hope you can learn from it while also keeping an open mind to how other nonspeakers might differ from what I share.
I also want to apologize that I cannot reply or otherwise interact with you to the extent I want to. It is a shame that my energy levels and slow communication limit what I can do. I hope you know that Tara shows me your comments and messages and that I love them! I wish I could reply to every single one.
Thank you so so so much for being with me! It is such an absolutely amazing feeling.
Wow, am I ever feeling run down. I have been pretty low in energy the past couple of weeks, and a busy couple of days at the end of last week really drained me. It is so frustrating to not have more resilience in my body, and tough to understand how I am physically feeling and to identify possible causes for how I feel. Maybe it is a bug trying to get me, or something has thrown off my gut biome, or there is some change in external conditions, or my mental and emotional state are somehow altered, or who knows! I struggle to try to gain insight on these times of distress.
I am so needing wider understanding that my flavor of autism is such a physical disability. And I know many of my nonspeaking autistic friends have many more physical challenges than I do. It is such a central part of our disability: our bodies are not wired to function as we wish or need them to.
I am so proud of progress I have made in my coordination and motor control in the past couple of years, with amazing practitioners and near-constant inner work through visualization. I used to have autonomous and accent-less speech as a cherished goal, mainly driven by a desire to fit in but also of course a need to communicate more easily. I now know it is a very unrealistic goal, and that is a hard realization to accept. But I will keep working on my speaking, and I know I can still improve in that and many other motor skills. It is just a bit tough to acknowledge how much work it all is.
This is a bit rambling, but my main point is that for me and others like me, our apraxia is not just about our speech. It is our compulsive movements, inability to sit still, low interoception, strange noises, and even injurious behavior. It is why I can’t go out in public unsupervised except in rare situations (like on a sheltered beach away from roads), why I can’t cross the street on my own, why I am so nervous when I see police or security guards who might overreact to my odd behaviors, why I can’t always clean myself properly after using the toilet, why I express frustration or fear through screaming and gritting my teeth and stomping and galloping, why I am so easily tired. It is why I can’t cry even when my heart is breaking, why I can’t be sure I can call 911 if there were an emergency and no one able to help me, why I am often panicked when I realize I urgently need to relieve myself.
I am so new to thinking about my disability as a physical one. But that is such a central defining component of my disability: my physical limitations. It is a helpful shift in perception for me. I am clearly still in the early stages of elucidating what that all means. For today, however, I needed to share my thoughts as they are.
During therapy today, my amazing therapist and I were discussing contentment and the tendency for trauma to leave a legacy of hypervigilance and anxiety. I have been working so hard to manage these, so so so hard, and making progress and growing more resilient. At one point, I realized: it is so much work to be content, but it is also so much work to live without contentment, so I choose to strive for contentment.
It helped me so much to chat about these things. I am hoping it helps some of you, too!
Two years ago, I wrote my first real class assignment! It was for Modern & Contemporary American Poetry (ModPo), a course on Coursera taught by U Penn. It so lit up my life, and opened up my world to the power and art of poetry. The professor, Al Filreis, was so welcoming of me, and so were the other students. And I so fell in love with the poems of Emily Dickinson, who was the first poet we studied. Something about her understated strength in her words captivated me. Imagine the thrill of discovering a new passion after decades of stagnation! Wow. It so absolutely illuminated my soul!
Here is a copy of that poem and my brief discussion post on close reading it. I was so happy to post it. But then the professor read it aloud during that week’s live meeting, and I felt stars beaming out of my heart! Then several classmates responded how my interpretation changed their view of the poem. This felt like a dream to me, after never being acknowledged for my ideas! This was the most recognized I had been in my 35 years of life.
I went on to complete the course and earn the first meaningful certificate of my life! And I took another course at a local community college, which I enjoyed and aced, but from which I realized that formal education is not something I need to achieve my goals. But I still love learning from experts in diverse fields, and I enjoy sitting in as a Community Teaching Assistant for the ModPo course each year. It changed my view of myself and what I could contribute to the world! I am so thankful to the professor and the ModPo community for being so open to me.
Your Friend,
Danny
Response to Emily Dickinson’s “I Dwell in Possibility” (poem 466)
Title: Resonates with my autistic experience (written Sep 2020)
This really spoke to my perspective as an autistic, apraxic, minimally-speaking man. The imagery of her dwelling in the world of Possibility is akin to the constrained yet limitless world of my autistic mind.
The words “A fairer House than Prose” reflect the wonderful universe in my mind clashing with the structure of the neurotypical world. The latter seems so limited in its capacity for other ways of thinking.
The line “And for an everlasting Roof/ The Gambrels of the Sky” is evocative of the infinite wonder in my mind. Yet the notion of the impregnable chambers speaks to the challenges of being understood by the outside world.
The windows, to me, suggest an ability to look outside. This is a heightened ability in autistics. We are able to observe so much of what is around us. Yet the world outside rarely looks in.
The visitors are those thoughts that fly into our minds. They need no doors to open. They freely enter and keep me company.
The gathering of paradise is exactly what I do in my autistic house. The routine, rule-filled, prosaic world outside is so restricting. Yet my limitless world must exist within it.
This is a reminder that I have an online magazine Leo in Bloom about nonspeaking autistic experiences, including my own. We just wrapped up August’s issue on the theme Blooming into Communication, and I hope you are able to peruse and enjoy!
Here are some tough feelings I have been heavy with this week. Thank you to Unrestricted Interest for sharing this in your newsletter, The Listening World (I recommend subscribing for more poems from neurodivergent authors, including some of my friends)! Link: https://thelisteningworld.substack.com/p/all-i-can-say
I am so hoping this resonates with you.
Your Friend,
Danny
Introduction
This poem expresses the deep and unyielding truth: my disability limits me. It is an unflinching message that I and many others reckon with internally, but often feel afraid to share. We are so pressured to be beacons of hope and inspiration, to make others feel better. And for much of my life, I have been told by ignorant educators that I am more limited than I actually am, so I am also reluctant to acknowledge my real limitations.
It sucks. To put it more eloquently would be to sugar coat it. It doesn’t mean that my life is hopeless or worthless or not full of beauty and joy. It is the unvarnished, grainy truth. And of course it gets me down. I am human and I feel disappointment and frustration. I don’t need comfort, but I so need compassion.
Those who know me are aware that I am generally a positive person. I love much about my life. My autism can truly be a wondrous experience, full of light and color and intelligence and mirth and profound feelings. And I hope that I can convey that acceptance of the challenging parts of my life is a part of truly acknowledging my existence in its totality, along with my many joys.
All I Can Say:
Sometimes I have to face that being disabled sucks
All I can say: Sometimes I have to face that being disabled sucks
I love the word absolutely
And its emphatic authority
For excitement or for firm denial
And I love the word wow, wow exclamation point,
And also totally,
And I so love so,
So so so much
I love to spell hmmm…
And truth be told I love to spell profanity
Not the word profanity, but that subset of words deemed impolite
And I feel my heart flow out of my body into the world
When I string together my poems
But it is one of those days when
I feel so absolutely, totally
The so so so harsh reality
That I laboriously, painstakingly, so fucking painstakingly
We are shifting the focus of The Ocean and Us to be more about adaptive ways of interacting with the ocean! We have new interview episodes coming up starting next week. And I will still be sharing my own ocean journey!
Speaking of, yesterday we snorkeled La Jolla Cove. I was so tired because my body has been struggling lately, and the water temperature had dropped 8 degrees since my last time in it over the weekend, but I still wanted to get out there. And Tara’s GoPro got flooded a couple of weeks ago, so you just have to trust me when I say that it was an amazing snorkel! Because 2 curious sea lions swam and swooped right under us! Then they kept playing in the cove as we watched from a respectful distance.
Then we walked along the coast. It was a gorgeous day, and we watched another group of sea lions hanging out and surfing the waves breaking on the point. It was so magical to watch them cavort in the waves, zooming along then leaping and flipping in the air! And there were mama and pup sea lions on the rocks.
Then we went to Children’s Pool to try to see harbor seals, but there were only a couple of them on the sand and then some on the rocks nearby. Tara taught me more about sea lions and harbor seals, and their conservation and behavior and life history. I loved it!
Presenting part 3 (of 3) with Dr. Jo Marie (Jom) Acebes of Balyena.org in the Philippines! She shares about the importance of considering human well-being in conservation (with an example of ray fisheries in the Philippines), her hope for the future (including the importance of youth using social media), and plans for Balyena.org! I so enjoyed chatting with Jom and learning more about her work and even practicing some Tagalog, and I hope you enjoy watching!
Jom: Yes! I studied specifically the local fisheries for rays. I initially focused on historical – like what they did before, when it was still legal to catch them, like in the 60s, 70s. But by same time as the dolphins were protected, manta rays were protected, but they did not include the smaller rays. So I was very interested in the history, how they hunted them, the culture behind it, and I wanted to prove how important the fishery was to those people who were hunting them.
The laws changed very recently where they protected all of the species of mobula rays. So I was also trying to help the community figure out how much they were catching just to prove to the government that it wasn’t really that big enough to be significant in terms of endangered the population, but we don’t know the numbers. No one was really studying population abundance. Also again trying to prove how important it is to the community in terms of livelihood.
Unfortunately, the ban came in 2016, so no fishing now for any mobula rays, so that community has stopped fishing. So they have not recovered, they still haven’t recovered, and they haven’t really replaced it. There are some who stayed in fisheries, but using gillnets, which is a lot worse for other species, including marine mammals. And there’s still bycatch (accidental catch) of rays.
Tara: See, that’s the problem. Jom and I have talked about this pretty much whenever we meet: conservation is not just “we’re going to protect this animal now.” There’s people’s rights and well-being involved, there’s the larger system, everything’s connected. If you change one thing, you might make a lot of other things worse. So it’s a shame that it had to end up that way, but it’s really interesting that she studies the community just as much as the rays.
D: I am so interested to learn more about this kind of situation!
T: I think it happens a lot
J: A lot of people don’t want to talk about it. That’s what I find.
T: I think there’s this idea that if you’re doing conservation, you must be doing absolute good, because your motives are good, at least where certain animals (usually it’s animals) are involved. But it can still have detrimental impacts
J: On people. And they don’t want to talk about people. They want to talk about just animals
D: Wow, I am so disappointed to hear that!
J: It’s just like that, unfortunately. Even in conferences, they say they want to talk about it, but they don’t really want to talk about it. Yes, they want you to present, but after that, that’s it
T: It’s interesting, when we were at the Barcelona (Society for Marine Mammalogy) conference two years ago, I had the team from Myanmar who you interviewed – Wint Hte and Yin Yin and Aung Naing Soe – they come from a human research background. And even after the first day, Yin Yin was like “They don’t talk very much about people here.” And this was her first international conference, and with everything that’s overwhelming happening, she was able to make that observation very quickly. But I think it’s changing – very slowly – but I think it’s changing, especially with the younger generations of researchers coming in.
D: Are you hopeful for marine conservation in your country?
J: Hmm… that’s a tough question. Okay. I would say I would like to be hopeful…but I am hopeful for the people who are working in conservation and the younger generation. I think that’s the good thing about the generation now – they’re so creative, and especially how they use social media is just amazing.
I don’t know if you follow the one in Dumaguete, the No to 174?
T: No, I haven’t – is that the reclamation?
J: That’s the perfect example, if you have a chance to look it up on Facebook. It’s run by a group of really young people, and they’re amazing how they’re coming up with infographics and how they… they’re so active, and I just wish we had the same group as them up north. It would make so much difference. They’ve already been running this campaign for almost 6 months, they started in July or June. And they just won’t give up, which is great.
And the people who are proposing to build this reclamation, I think they’re about to give up. If it wasn’t for this young group, I think that would’ve just gone through. So the generation now is just, I think, is amazing. So I’m hopeful about that, definitely.
T: I think the Philippines is one of the places where – maybe it’s because it’s one of the places where I’ve spent the most time for my research – I’ve heard of some of the most ridiculous development projects. Why would you build this super intensive development that destroys the natural environment of some of the most beautiful spots – okay, maybe you can build them somewhere where there’s nothing else there, if you’re making a huge resort or amusement park, [you coming back, dude? Yes] but to build it in places where you already have things already there to attract people… [oh, he’s getting some water or tea] I’m glad that that one’s maybe on the way out…
J: It was so ridiculous. When I first heard that, I think everyone reacted the same way. And like how the politicians and proponents kept insisting, despite – this is like random people, not even marine biologists, random people going in the water and taking photos of the reef just to prove that there is a reef there and there’s so much life there and there’s fisheries. They [proponents of the development over the reef] kept on saying, there’s nothing there, everything’s dead. It’s just ridiculous when you hear people talk like that, like what is wrong with you? Everyone else is saying that you’re wrong, and they just refuse to admit it.
T: That shows the importance of something like citizen science. If there’s no one to point out any differently, oh, “they’re saying it’s all dead, okay!” – so it’s good to have that other narrative
Hi mister, welcome back. So Danny has really amazing hearing, so he probably heard all of that.
D: Indeed I did!
T: Want to sit down bud? We can finish soon if you’re getting antsy, we’ve had a really nice conversation so far, lots of good material.
D: I am sorry, I am getting restless because I am so excited about these issues and ideas!
J: I hope it doesn’t depress you or anything, because it does to me, that affects me.
T: It’s a hard job. I told you how I feel about people who say “Ocean Optimism!” No! I don’t want to see that hashtag one more time. Because if you’re not an optimist, they think you’re a pessimist, but no, I’m a realist. What do you think of that feeling of despair and how do you balance that?
D: It is so tough but I am so inspired by people like you and the work you do!
J: Thank you. Yes, it’s hard work, but we’re trying. Try to be positive.
T: Our dad used to say, “It’s a tough life, but someone has to do it!”
J: True!
D: How did you start getting interested in marine conservation?
J: It’s a long story! But the short path is: from work. So, I really wanted to be a wildlife veterinarian, but in the Philippines back then there wasn’t a lot of opportunities, so when I was looking for a job, I found out that there was a WWF in the Philippines, so I walked into their office and volunteered (they didn’t have an opening). So that’s where I learned everything about marine conservation, not in books – I didn’t really study marine biology or conservation, I didn’t know anything, I can’t remember knowing anything about conservation even in general before I started working for WWF.
And also I learned about whales and other marine mammals also from work, I just studied on my own and from people like Louella [Dolar] and Bill [Perrin]. So, it’s like, how do you call, serendipity? So it just so happens there was WWF, there was an opportunity to volunteer, there was a project that was available that I could work on as a volunteer, and that’s how I learned about everything.
D: Wow! You are a woman of many skills!
J: Thank you! I don’t know if you can call that skills, but yes, I studied…
T: I think you can call that skills – very highly trained skills.
D: Do you use your vet training?
J: Another very good question. I don’t use it as much as I want to, but I do get to do it more when I deal with strandings.
T: And she takes care of the different animals, the cats and dogs that hang around her field sites.
J: That’s my only actual veterinary practice, like my own pets
T: I called you once from Myanmar – we had a really sad incident with a dog – I was like “Jom, what do I do?” so we all need someone like Jom around everywhere, even for cases like that apart from marine conservation.
D: Totally! And my last question: how are you going to move forward with Balyena.org?
J: Yes, that’s a big question. For the past 2 years, especially because of the pandemic, so right now everything is suspended except for our fundraising. So we’re still working on our fundraising. The newest plan now is just – aside from, we do have 2 proposals that we’re waiting for results, we hope to hear this month before Christmas hopefully. So if we get that, then it’s good news for the humpback work and the blue whale work. If we don’t, we still plan to continue the monitoring, but we do it over a shorter period. We do have some savings. It’s unfortunately that way, but it’s really dependent on funding. So it’s a big question mark for 2022 what we’re going to do, because it’s seasonal, most of our work.
We are trying to get new ideas. The newest one is we’re trying to get influencers – local – to promote Balyena.org and our fundraising work and hopefully that will give more attention to the work that we’re doing and hopefully get us some funding.
D: Wow! I am wishing you great fundraising success, and I am so hoping I can visit the whales one day!
T: Me too!
J: It would be great. You would enjoy it I think, on the islands, seeing the whales…
T: We went to see the gray whales in Mexico last year – he loved it. Every time he saw them, “whale!”, “whale!”, “whale!”
J: You would love humpback breeding grounds!
D: Let’s plan on it!
T: Sounds good to me!
J: It’s the season!
T: Now?
J: Yes, it’s started. You just have to hope the borders are open.
T: Yeah, maybe next year!
D: So, can I say “maraming salamat” (thank you) and “ingat ka lagi” (take care always)!
I am so loving my weekly snorkel outings! I am so lucky to live somewhere with such incredible marine life. I am also lucky to have the support to get out and swim with it!
Here is a clip from this week’s outing. So many sharks and rays and guitarfish! It was so magical.
Presenting part 2 (of 3) from our fascinating chat with Dr. Jo Marie (Jom) Acebes of Balyena.org in the Philippines! She shares about the conservation status of some marine mammals in the Philippines, and the challenges of trying to reduce the threats to those animals.
I so enjoyed chatting with Jom and learning more about her work, and I hope you enjoy watching!
D: So let’s talk about conservation of these whales. How are they doing?
J: So, humpback whales, they used to be considered Endangered worldwide. But then I believe in the last 10 years, they were lowered down to, first, Vulnerable (meaning not too much in danger) and then to Least Concern.
But the distinct population in the Philippines together with 4 other distinct populations in the North Pacific – based on the last estimate of how many they are, it’s been found that there are only about 1000 of them. And because they are genetically distinct and because they are found in the Philippines and Japan where there are still threats to them, they’ve been considered by the US through the Endangered Species Act to be Endangered. So they listed that distinct population as one of the endangered populations.
In the Philippines, they are also considered as Endangered.
So the threats: they have been hunted in the past, and this specific population has not recovered. And then trash, marine pollution, is one of the biggest threats right now, especially in, unfortunately, in the Philippines and in Japan.
In Japan, slightly different, they have threats in terms of shipping and whale watching. For us, not really, because it is fairly remote where they are found. But in the Philippines the most recent threat is offshore mining. So that whole area, the Babuyan Marine Corridor, is being threatened by the impacts of offshore mining. Not just on the whales, but more importantly on the fish and coastal areas and a lot of people depend on fisheries in those areas.
D: Wow, those are big issues and I am sure that they are difficult resolve.
J: They are. Honestly, there’s very little you can do on our level, because it’s governments that decide. Like offshore mining for example is very political. In the Philippines, especially, unfortunately, mining has always been a big issue, but because it’s supported by the government, it’s hard to oppose it because you’re seen as an activist, and it’s never good. In the Philippines, that’s quite dangerous.
T: It’s one of the most dangerous countries to be an environmental activist, sadly.
J: Actually, right now, if I wasn’t leaving, I was asked to attend a “consultation” because the company that is mining in that area wants to expand to increase their extraction. So I don’t know what’s going to happen.
D: Oh my goodness! Be careful!
J: Thank you. Yeah, I wanted to go, but I couldn’t, and I think they also time it that they know it’s still difficult to travel around the Philippines, because it’s far – I live far from that area, and they were doing the consultations on site
T: I mean, that’s a common issue with consultations, even conservation groups holding consultations, too. You can say you have a consultation, but it’s importat: who can come?
J: Yeah, the people who are supposed to be consulted are not there!
D: Wow, so how can you support conservation in your work safely?
J: With difficulty. What is he saying?
T: Oh, he’s just playing with the board. He likes to deconstruct the words he just spelled, and he’ll tap them in different orders.
J: Oh! With difficulty. We try, especially if it’s a big issue like this, we do try to get involved with the meetings when we can, but the safest way is just to do it via social media. We’ve been warned by other friends who’ve worked on these kinds of things much longer – we give very little personal information, obviously, like us individuals. It’s safer to put the organization in front and to work with other organizations. We do try as much as possible – we don’t attack, basically. We don’t say anything that’s too confrontational, especially to government agencies. Because that’s the tricky thing – these companies, for example that offshore mining company, work with our Department of Environment and Natural Resources, and they’re the ones who approve it. So we have to talk to them in a way that they won’t find it like we’re attacking them
T: You have to be diplomatic about it
J: Yeah, giving them the science explanation behind why we think it’s not good to be doing those activities. So we try our best to do it by talking and just giving reason based on science and trying to appeal for more meetings and consultations
D: That is very important work!
J: It’s hard, but yeah. Not easy!
D: So how are marine mammals doing in the Philippines?
J: In general, they’re doing well, because they’ve been protected since the 1990s. So they’re no longer hunted, but – there’s always a but – some species, like the Irrawaddy dolphins, because they’re only found in few very specific areas in the Philippines and they’re found in areas where there’s a lot of fisheries as well, they’re the ones that are still considered Critically Endangered. They get caught not just in active fishing nets, but trash – discarded fishing nets.
Some of the reasons why they are found dead, stranded, we still don’t know the reason why – it could be pollution, who knows. And then in some areas, like where a friend works, they’re planning to build a bridge for example which again is going to be detrimental to their habitat, that will definitely affect them.
But for other species, in general, there is no direct threat. Everything is indirect – either of pollution, there’s a lot of marine pollution in the Philippines, or accidentally being caught in fishing.
Danny With Words 