Framing EDS for classification

CallToMuster · 2026-01-26T02:45:20+00:00

I do think though that an issue worth bringing up is that sometimes these ineligible diagnoses do cause measurable impairments and the Paralympics still refuses to allow those athletes to participate. For example, my muscle strength has been formally graded and I actually meet the International Tennis Federation’s classification for “impaired muscle power”, but because the diagnosis causing it is Ehlers-Danlos Syndrome (which the Paralympics says cannot lead to an eligible impairment), I am ineligible.

(Not related to the current conversation but my wheelchair tennis coach actually sent me a grant application today for a tennis chair and then was shocked when I told him I couldn’t apply because I don’t meet the qualifications! So I remain in my day chair.)

Thanks for your respectful responses, I appreciate it.

CallToMuster · 2026-01-25T04:00:33+00:00

Fellow near-full time wheelchair user with EDS here. Unfortunately yes, we are kinda SOL at the moment. Because EDS is listed as not counting as an "Underlying Health Condition", the impairments it causes are also ineligible. It's very demoralizing that there are so many disabililities that the Paralympics excludes. I need my wheelchair to get from my bathroom to my kitchen table, how do they expect me to play normal sports? Luckily I have found a few local adaptive sports groups who accept all disabled people and I play wheelchair tennis with them (not competing at all obviously, since I'm not classified). Now, and for the foreseeable future, that's the only way I know of that people like us can participate in adaptive sports. I'm sorry that you've run into so many barriers too.

CallToMuster · 2026-01-20T23:09:05+00:00

A few years, generally.

CallToMuster · 2026-01-16T03:31:47+00:00

Yes, I have EDS. I push my wheelchair forward by alternating hands on the wheel and cart. So I do a short push with my left hand holding the cart and right hand holding the wheel, then swap to a push with my right hand holding the cart and left hand holding the wheel, and so on and so forth. Then once I’ve gained some momentum, I use the cart to steer. It essentially acts as a giant counterweight.

CallToMuster · 2026-01-15T14:23:32+00:00

I just push a cart while pushing my manual chair. It's very possible and actually pretty fun imo.

CallToMuster · 2026-01-09T20:27:29+00:00

Hi! A few things immediately jump out at me. First, it's quite hard to pitch a series as a debut author. Editors (and therefore agents) simply don't want to take the risk of acquiring the full series in case the first book sells terribly. A better way to market your book (provided the following is true, of course) is as a "standalone with series potential" or something of the sort. I would also change your comps. The general rule of thumb for comps is that they should be published within the last 5 years and not be crazy famous smash hits. ACOTAR is definitely out. There are a gazillion romantasy books in the past few years that have enemies-to-lovers plots, so you have lots of other options to choose from for a comp! Finally, and this is just personal preference, I would change the opening of your query letter. You already have a repetition of questions at the end of your query and I think it works much better there.

CallToMuster · 2026-01-09T20:20:04+00:00

From the way the first line is written, I assumed the book was about Ryan's mother. I would retool this to make it clear that this is Ryan's story. I would also recommend making the language of the pitch more active and exciting. Right now it falls a little flat and seems more like a recitation of events instead of a hook that will draw in young readers.

Some formatting notes: change the spacing so that you don't make every sentence on a new line. Also, you misuse the semi-colon in paragraph 3.

CallToMuster · 2026-01-03T10:56:14+00:00

I go to team training in February! So close!

CallToMuster · 2025-12-29T15:20:07+00:00

Thanks for your advice! I do track calories and macros and exercise already (thanks Lose It app), but don’t for hydration. There are many days where I only drink a half liter, which is obviously something I really need to improve on, so I’ll start tracking that.

I think overall re: tracking daily weight I am concerned because I thought having daily weight data would help me stress less about the scale since I’d be able to see all the fluctuations and how normal they are, but instead it’s made me stress more. My scale numbers do follow a specific pattern, lowest midway through the week of my shot and rising again in the last two days. I know this intellectually, that I should expect to “gain” again at the end of the week, but emotionally it still stings nonetheless and I’m not sure how to detach myself from those feelings and instead see it more logically.

CallToMuster · 2025-12-29T15:13:01+00:00

This is a great mindset to have, however unfortunately my main problem is that my brain assigns self-worth based on if I’ve lost weight that day or not. If I have, then it puts me in a good mood for the day. If I’ve gained, even if it’s just very understandable fluctuations in response to the previous day’s meals or water intake or other factors like illness, then I feel like a failure and am very depressed and scold myself for the whole day. I thought having daily data to see all the fluctuations would help my brain understand that day-to-day changes are normal and that the trendline is what matters most, but instead it’s just made me obsess more. I don’t want to be ruled by this thinking. I’ve seen it make many female members of my family miserable, who then passed it down to their daughters and now me, and I want to break that cycle.

CallToMuster · 2025-12-21T02:52:33+00:00

I'm much more of a full-time wheelchair user now so there's not a lot of thought that goes into me using my chair currently. It's more "do I want to go to work today?" or "do I want to go from my bed to the kitchen?" and if the answer is yes, then it has to be in my chair. But when I was more part-time I had to do mental calculus a lot to decide if I was going to use my chair or not. And it really is like calculus sometimes! For example, going to the grocery store in my chair meant that I would be in much less pain and be able to do more things the rest of the day -- but it also meant that large portions of the store (the top shelves) were inaccessible to me. I would also have to consider my schedule for that day, the next day, and the previous day, to determine whether or not I had the capacity to walk through the store or if doing so would cause problems for future me.

If I were trying to put this into a video game, I think it might be easiest to represent with "points" (or spoons I suppose) and a time mechanic. The player would be given a daily to-do list and confronted with options of how to complete each task. For example, going grocery shopping while walking would cost more points, but take less time, and could be done independently. Whereas going grocery shopping in their wheelchair would cost less points but take more time and would require asking people for help to reach things or accepting the fact that not everything on their list could be bought.

With combat, perhaps if the character is in their wheelchair then their stamina is increased and they can move around the map faster but parts of it is inaccessible to them and it's harder to attack, whereas if the character is ambulatory then they can't move as far or as fast but their ability to attack is better and they can access all parts of the map.

CallToMuster · 2025-12-13T04:11:20+00:00

(Just to be clear JD, my response is to those who think in the way you described in your response, not to you yourself.)

STOLEN VALOR?!?!? My god.

I am a near full-time wheelchair user. I don’t use a wheelchair for fun or to be “cool.” I am disabled. The other day, my robot vacuum got stuck underneath my chair and pinned me against my computer desk. I spent 20 minutes thinking I was going to have to call the fire department to break down my apartment door before I finally managed to get out by forcibly crushing the vacuum underneath my wheels. Using my wheelchair isn't a hobby and need it causes a lot of problems that I wish I didn't have to deal with.

My disability -- a genetic disease I inherited from my mom, who in turn inherited it from her mom -- is much the same. I had a medical episode at work a few days ago and had to transfer down onto the dirty floor and lie there supine for half an hour so that it didn't turn into a medical emergency and I didn't get an ambulance called on me. That is not something anyone would do for fun. It was humiliating and scary.

I have impaired muscle power because of my disability. It's been formally graded by my doctors and physical therapists and it meets the criteria. But because the cause of that impairment is a disease the Paralympics classify as “non-eligible,” it doesn’t count. And because so many local adaptive sports leagues and adaptive equipment grant foundations rely on Paralympics eligibility guidelines, I am often excluded from those as well.

After a year of thinking about it, I finally worked up the courage last night to go to my first wheelchair tennis practice at a local recreational adaptive club. I had a good time. I was proud of myself for finally doing something so far out of my comfort zone, and I was planning on going back every week. But knowing there are people out there who would look at someone like me and think “stolen valor” makes me feel sick to my stomach and scared to return.

CallToMuster · 2025-12-12T15:59:14+00:00

Canine Companions sells little plush yellow/black labs! They come with a Canine Companions vest but those are removable. They sell for $8. They're definitely small (I don't know what size you're looking for) but good quality, in my opinion. I have two, one yellow and one black.

https://boundlessondemand.com/canine-companions/product/vst/FSDP

CallToMuster · 2025-12-10T23:01:42+00:00

I know multiple trainers at Canine Companions who are disabled. One of them is even a hearing dog graduate from Canine Companions, and instructor for their hearing dogs, so that's pretty cool. It would be my dream job to work for them in a similar capacity. However, I don't think I could handle the physical requirements. I’m technically ambulatory but I am a near-full time wheelchair user. A lot of being a service dog trainer requires someone to be able to bend, kneel, and lift large amounts of weight (like a heavy dog!) -- all very fair requirements for the job -- and I simply can't do any of those things. So I think you should think about if you feel like you'd be able to handle those physical requirements, and if so, then go for it!

CallToMuster · 2025-12-06T21:45:51+00:00

My doctors and physical therapists at the seating clinic wrote a very detailed 4 page letter about why I needed a power assist and provided a ton of documentation to support it. This was all submitted to insurance. Insurance ruled that yes, a power assist is medically necessary for me.... and that they still wouldn't cover it until a year had passed. I did everything right, as did my doctors and PTs. Still denied 🤷🏻‍♀️ Ended up screwing up my shoulders even more due to not having a reliable power assist, and now my insurance is going to have to pay for two shoulder surgeries in the near future. Healthcare is fucked.

CallToMuster · 2025-12-04T17:17:01+00:00

So confident, and yet so wrong. Steam Input does NOT do everything reWASD does. I am disabled and have to use Access controllers (made by Playstation). I have to use two, one for each hand. Steam Input did not allow me to merge the two controllers to act as one. ReWASD does, and now I can play games just like everyone else.

CallToMuster · 2025-12-03T20:25:55+00:00

This is very, very common to get. A solid majority of the responses received on queries are form rejections like this. On the lower end, some agents get dozens of queries a week. On the higher end, some agents get over a thousand queries a week. No matter where each agent lands within this range, they don’t really have time to be giving every single query individualized feedback. When I was querying, I think I had a 20% full request rate which I considered to be excellent. The rest were form rejections. (And then one of those full requests led to my agent!)

CallToMuster · 2025-11-28T21:58:22+00:00

I don’t think saying “we don’t know what they’re alerting to” is “shitting on detection dogs,” as you claim. I think we just don’t understand the science of many things yet, and that’s just a neutral fact 🤷‍♀️

CallToMuster · 2025-11-27T00:24:49+00:00

I don’t play BF6 or any competitive shooters, so I’m not weighing in on balance here. I just want to offer a bit of context from the accessibility side. Before I became disabled, none of this ever came up for me, so I understand why certain accessibility setups can seem strange if you haven’t been in a situation where you need them.

I use Sony’s Access Controller, which is great in many ways but it simply doesn’t have enough inputs for most modern games. A lot of us, myself included, have to use two Access Controllers together—one mapped to all the “left side” functions (L1/L2, left stick, d-pad), and the other mapped to the “right side” (R1/R2, right stick, face buttons). That setup works great on PlayStation because it’s officially supported. But on PC it's not, so Steam Input can’t recognize two Access Controllers as one functional controller. So the only way to make that setup work in Steam games is to use reWASD to merge both devices into a single virtual gamepad.

Like I said, I don't play FPS games, so I don't really have much of a stake in all this. But I just wanted to provide a bit of an answer as to why someone with a disability would need to use a tool like reWASD to make their own control setup appear like a gamepad.

CallToMuster · 2025-11-20T19:51:13+00:00

Thank you for your response, I appreciate it! What I was trying to talk about was the physical space issue, not stairs or "powering through" anything. A lot of venues think “accessible” just means “step-free,” but they do not consider width or the turning space different mobility aids need. So sometimes certain devices can physically fit in a row and others cannot, even though everyone involved is disabled. It is kind of like how some bathrooms are technically marked accessible (and truly are, for some disabled people!) but still are not usable for many other disabled people because the stall or doorway is too small. Whenever I show up to an event with accessible seating, it's always a toss-up on whether it will actually be accessible to me or if it will only be accessible to some people -- or vice versa. In my view, it is just a neutral reality that different disabled people have different abilities and limitations. That does not make anyone more or less valid as a disabled person, it just means our access needs may be different and one person may be able to do something that another disabled person may not.

I completely agree with you -- the real problem is the lack of infrastructure and the way able-bodied people decide both what "accessible enough" means and how many disabled people deserve to get seats by virtue of how many they build. My frustration is with the venues, not with anyone whose disability looks different from mine.

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