I'm an Indian man living in Toronto with spino-cerebellar ataxia, a degenerative muscle condition which started showing symptoms in my early 40s. I'm now permanently wheelchair-bound, and have issues with speech and motor skills. My daughter, a reddit user, is helping me with this AMA.

About a year ago, I was let go from my job as a financial analyst due to the perception that I wasn't able to keep up with the work (although this was not true, the company had recently changed owners and they were cleaning house). I have since been collecting long-term disability insurance, but am trying to get this business off the ground because I prefer to be gainfully employed!

I, along with 3 other men who are also wheelchair-users, are trying to set up Nepal's first affordable accessible resort, and are working to crowdfund it. Currently, the only accessible options are luxury and five-star travel options; most people with disabilities aren't able to afford this. The primary reason that we want to do this is that we all want to actually work and create something - the secondary reason is that we all feel that being differently-abled should not limit your access to the wonders of the world. Here's who we are:

  1. Me - ex-banker, activist for disability and LGBT causes

  2. Nepal’s only architect-in-a-wheelchair

  3. A travel guide and parapalegic, who lost everything in the earthquake a few years ago

  4. Travel consultant and activist for disability causes

My daughter (the redditor) thought our project might be something that is interesting for you to read about, so please do ask me anything either about the project, or about my partners, or about the ataxia! I will also be happy to provide the GoFundMe link for anyone interested.

My Proof

edit: Here's the GoFundMe, and here's the website, which is accessible.

Comments: 77 • Responses: 24  • Date: 

AndrasOpinio27 karma

(1) Why did you choose Nepal as the location? (2) How were your previous employers legally allowed to fire you?

desispeaks41 karma

All of us have a personal connection to Nepal, one way or another. We're also very much aware that there is a lot of foreign interest in Nepal and the Himalayas, but there really isn't very much infrastructure there, and even less so for people with disabilities, so we feel like we can make a significant difference.

With regard to my firing, it was pretty murky and dragged on for the better part of the year. They claimed my work was suffering, I was able to provide documentation that it was not, and really they were just grasping at straws to sack a bunch of people - me included. As I mentioned, there were new owners looking to clean house. I was lucky enough to be able to get a lawyer involved and have them pay out long-term disability insurance and a decent severance. Some of my colleagues weren't so lucky.

NicSui16 karma

2 Questions:

  • If you could change 3 things of your past that would impact your present, what would it be?
  • What financial advice would you tell your 25-year old self if you could talk to him today?

Thanks for the AMA and have a great day.

desispeaks31 karma

Those are awesome questions! For the first question:

  1. I would like to have been more honest about my sexual orientation to myself and my family.

  2. I'd like to have done more travelling. I'm really physically unable to now.

  3. I would have done some better financial planning.

Which leads me into your next question: "25-year-old Me, save at least 10% of every single paycheck, and put that savings away before you spend ANYTHING. Spend what you don't save, not the other way around, and for god's sake, start right now!" Then again, I tell my kids this and they don't really listen... so I'm not sure that 25yo me would listen either, haha

NicSui11 karma

You're a great man! Wish you the best

desispeaks8 karma

Thank you, that means a lot!

CrapfestLicker4 karma

I would like to have been more honest about my sexual orientation to myself and my family.

But then you wouldn't have had your family in that case.

So there's perhaps a silver lining to be had?

desispeaks2 karma

The best thing in my life are my two kids, which wouldn't have happened, that's true - but I don't relish having hurt as many people as I did.

penciljockey1238 karma

Is this a recent idea or something you considered doing prior to being wheelchair bound? What's the hardest part about your day to day life that people without mobility issues don't have to worry about? Thanks for doing an ama and sharing your story.

desispeaks16 karma

It's a fairly recent idea. When I wasn't disabled (for about 45 years of my life), I took a lot of things for granted, and honestly didn't give it much thought. Over the last 15 years, everything's sort of slowly falling apart so I'm much more aware of how limiting being differently abled can be - whether in terms of mobility or speech or anything really. Out of the 4 of us that are working on this project, 2 us developed our impediments later in life, and 2 of us were born with restricted mobility, so while we face similar difficulties, I think we approach them differently. We all got here through different roads.

With regard to my day-to-day life, I'd say that there are three things: One is that I have many unsolicited religious conversations, wherein the crux of it is that I'm just not praying hard enough (I'm an atheist) and I somehow 'deserve' to be in the situation I'm in. The second is that a lot of people unconciously connect physical disability with mental limitations and can be quite condescending. I'm just as smart - if not smarter - than a lot of people around me, but being in a wheelchair, and not being about to speak as clearly as I did 10 years ago makes people assume otherwise and treat me like a 'special little guy'. The third is that I'm not able to do things spontaneously and independently. Everything has to be planned in advance.

BabyMcHaggis7 karma

How far along are you in getting the resort off the ground?

Can you please post the GoFundMe link, and the website for this project?

desispeaks11 karma

The building and the outdoor spaces are ready. There are 4 rentable rooms, which we are in the final stages of putting together. We're hoping for completion by the end of January. There are several small details that we need to address because the idea is the when someone with a disability wants to visit, they share the details of their disability with us (whether it is mobility, sensory, or cognitive) and we will tailor their experience to best address their specific needs. Accessibility isn't a one-size-fits-all deal.

Here's the GoFundMe, and here's the website, which is accessible.

Wardiel7 karma

What sort of differences are needed in an accessible lodging in Nepal? I've never been, but assuming other lower cost options are somewhat lacking - what will you focus on to make your setup different, aside from the obvious ramps?

Thanks for doing this ama

desispeaks9 karma

The rooms and washrooms are constructed to international standards of accessibility - these options are really only available in 5-star resorts in Nepal currently, if at all. We will also have personalized airport pickup/drop and sight-seeing services, tailored to a person's specific needs. Because we are only catering to 4 rooms, we will be able to manage this personalization fairly easily I think. We're also partnering with sports and Himalayan trekking organizations to modify their offerings for wheelchair-users. Once again, this is not something that is broadly available except for when you're able to throw piles of money at it - we're hoping to make it affordable for average middle-class people because of the small-scale nature of our business.

tinroof-rusted6 karma

Will you be needing volunteers to help onsite at all? This is great. I am planning to go work in Nepal as part of a medical team in 2017.

desispeaks3 karma

That would be fantastic! You can send me a private message, and we can talk about this further :)

starzined6 karma

would you mind elaborating on your partners and how all of you came together to do this?

thank you for the AMA and best of luck for all your endeavors!

desispeaks7 karma

I first met one of the men (our tour guide) after he lost his home in the recent earthquake and some of us in Canada (an ataxia group) were helping him rebuild. The second person is a spinal-cord injury survivor and was introduced to us by the first man, and they are long-time friends. The third partner is also their friend; he is an architect and Nepal's only wheelchair-bound architect - he specializes in accessible construction and is by far the coolest of the four of us :) We've all been talking and Skyping and exchanging emails and generally becoming closer over the past year, and are all at a point in our lives where we want to be able to sustain ourselves without help from the government or a charity or anything like that. This idea was born from that desire.

EJables965 karma

Sorry if this sounds crass but how would a resort full of disabled people safely evacuate a fire? This was something some studio mates and myself thought of after an all nighter after learning to plan around egress and circulation.

desispeaks1 karma

The resort staff (many of them, anyway) would be fully-abled, so their assistance would be invaluable. Since we are customizing the actual construction of the space, we are able to take into account easy comings and goings, given that we will have a steady stream of disabled people coming in and out. For someone who is disabled, it is better/easier to manage in an emergency situation like a fire if they are in an accessibly-constructed place.

We are also going to ensure that we have strong connections with the local emergency services to assist for this, or just any health issues that may come up.

We'll also make sure that we have regular fire and emergency drills. This really isn't something that's done with small-medium businesses there (only international companies who have to do safety audits do these drills), but you're right, it is absolutely something that needs to be prepared for, given the nature of our business.

Odoyl-Rules5 karma

My BIL has Friedrich's Ataxia (it's quite advanced at this point... He can no longer talk or walk at 24 but his mental capacity is still "normal."). What is something people do with good intentions that you can not stand?

What things would make your life easier/better with regard to the disorder you have? I'd like to send him and my MIL some things to help them out but I have no idea what that would be.

desispeaks2 karma

When they tell you to believe in miracles, or maybe try Vitamin E. Like you're some kind of idiot who just hasn't tried the right thing to cure you, and they are some kind of fountain of knowledge with answers that your poor disabled brain would not be able to arrive at on its own.

With regards to what to send them, I have a cool holiday gift guide (items ranging from $15 - $1000, things as big as an access-modified tablet, or as small as bibs for when they eat) that my ataxia group had made up this year that i'm happy to share with you! If you want to send me a private message with your email address, I'll send it to you.

himalayanSpider4 karma

I am a Nepali. I wonder which place in Nepal are you building the resort?

desispeaks1 karma

Panauti, 30km out of Kathmandu. It's a small town, and gorgeous.

himalayanSpider1 karma

Thats where my dad is from. It's a very historical town, it's believed to be older than Kathmandu city.

desispeaks1 karma

When we open up, please ask your father to come visit!

Davecasa3 karma

Many disabled people are very independent, and able to live full and interesting lives. But many are not. Do you worry that as the resort becomes more accessible and provides more services for disabled people, it may come to resemble a medical facility in a way that detracts from the whole resort "vibe"?

desispeaks2 karma

Certainly we will try to accommodate as much as possible by having discussions before guests arrive as to what their needs are, but if someone needs round-the-clock medical attention, it is unlikely they will be a guest at our resort. If they do decide to come, I guess we'll do the best we can.

Although to be honest, it's pretty early to worry about that, we're still trying to get seed money to get it off the ground to begin with!

Metalocity2 karma

My wife has SCA2, but we don't let it stop us from traveling. I'm glad to see a more affordable accessible lodging in Nepal, but how accessible is everything outside of the resort?

desispeaks1 karma

The country's infrastructure is severely lacking, and was further destroyed by the recent earthquake. One of our team members, a local tour guide, is a parapalegic, so he knows all of the local activities that can be enjoyed by someone with limited mobility/senses. We'll be relying on our team to provide solutions that don't readily exist.

r00ks2 karma

My grandfather had SCA type 3 and it was incredibly debilitating in the later years, basically becoming trapped in his own body.

What type do you have and do you fear the thought that this may happen to you someday?

desispeaks1 karma

SCA1, and yes - that's why I'm trying to get as much out of my life as I can.

blue_ash2 karma

I want to say hello, and my family has SCA1 also. We're on the West Coast. I am fishing for a question, but I am overwhelmed by emotion. Your project is fantastic. At first glance, without reading the website or gofundme, I was all skeptical, thinking this was just another grab by rich westerners. But your team is so impressive, you come from such an authentic place. I really admire your story and the stories of your team mates. This project is so great, for abling so many people, on so many levels, starting with giving yourself a job.
Now I have to think of a question. .. when you folks earn your first 10 million dollars, will you donate a million to SCA1 research? ;) thank you for doing your work.

desispeaks2 karma

I thank you for your kind words! The sad truth, however, is that while people are incredibly encouraging and supportive with their words, they're not really inclined to help with the crowdfunding for whatever reason so it's proving difficult to get this off the ground. But yes, if and when the millions start rolling in, it's going to help SCA1 research :-)

Kodona1 karma

What was the cost of the property in Nepal? nice lookin place!

desispeaks1 karma

I don't have an answer for that, it is owned by one of our partners and his family.

hoarseofcourse1 karma

Very interesting work and project!! This is especially intriguing to me as my grandfather passed away three years ago from spinocerebellar ataxia. He had the condition for over 25 years. How were you first diagnosed with the disease? My dad has been told he has a 1 in 4 chance of having inherited the disease but he has chosen not to be tested. What are your thoughts on this? If you could have known your own diagnosis sooner, would you have wanted to know? Thanks!!

desispeaks2 karma

Thank you!

I inherited the condition with a 50% chance of getting it from my mother. My first physical symptoms - difficulty walking up/down stairs - showed at 40, and I got a whole series of tests done at that time.

With regards to your dad not wanting to be tested, I completely understand that. And frankly, there's nothing really to be done (since he's already had his family and built his life) except try to manage symptoms, so it's just a burden of knowledge if you have kids. If I had known at 20, I may not have had kids, because now they have to worry about whether they want to get tested if they want to start families etc.

And yes, if I had known about this 50% chance thing, I would have wanted to know sooner... again, just because of the kids thing.

Miesmoes1 karma

What do you like most about the project?

desispeaks2 karma

I love that I get to collaborate with such interesting people as my partners!

As a disability activist and a disabled man myself, I believe that people with disabilities should have the same opportunities as someone who is fully-abled; this project not only allows that for the owners of the business (We get to be gainfully employed, just like anyone else), but for our guests in the future as well. Why should someone miss out on the wonders of the world because they're in a wheelchair? I like that we're trying to give people that chance.

akhilegends1 karma

Was it your idea, or did you and your partners brainstorm together?

desispeaks1 karma

It was absolutely brainstormed as a team - they're local and have intimate knowledge of logistics etc.

nicktanisok1 karma

Might be far off, but have you watched the Japanese drama called "1 liter of tears"? It deals with a similar condition that happened to a young girl, sad but also inspiring.

I respect anyone with a drive to achieve something and I wish you the best in setting up the resort.

desispeaks1 karma

I haven't seen it, but will add it to my queue.

DitaVonTeas1 karma

If this venture is successful (which I hope it is!) would you consider either expanding the place in Nepal, or setting up a similar venture somewhere else? Would you envisage having a chain of accessible, affordable locations worldwide?

Good luck with it all.

desispeaks1 karma

We'd love to be able to expand in Nepal! And, at this stage, we also encourage copycat businesses :) The more there is available for affordable accessibility, the better it is for everyone!

I think this is kind of the opposite of a corporate model in that there are really no trade secrets, and we urge people to help us out and also to take ideas from us to implement themselves.

YouAreFullOfShitMang-1 karma

Do you think that the disinterest among redditors in this thread is a statement of where their priorities lay? Do you think this would have gotten more attention if it was zac effron sticking a bowling ball completely up his ass?

I do.

desispeaks2 karma

Haha I'm not entirely sure, but my daughter agrees with you (she's helping me with this AMA) and also thinks that they'd be more inclined to fund a bad Zach Braff movie. I know Zac Effron, but I don't know the Zach she's talking about so I can't really comment.