JMorrow
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- Sep 28, 2014
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Well, hello there. This is my first post here, and I'll admit, I’m a bit scared.
Because you see, I'm… unusual.
At 32 years old, I'm one of the oldest people in the world with Spinal Muscular Atrophy, a type of muscular dystrophy that almost exclusively affects children. While I have full sensation, I can't move anything but my lips and eyes. I have almost no muscle tone whatsoever, not to mention a bit of scoliosis, so the shape of my body is exceptionally odd. My stomach is twisted to the left, one shoulder is higher than the other, my chest cavity is deformed, my stomach pooches out (I can't hold it in), and on and on.
But I want to upgrade my wardrobe.
Over the last few years, I've gradually become one of the most popular bloggers in the world. Working online, using speech dictation software, I've built a multimillion dollar company with employees across the globe. I stay at home most of the time, and when I do venture out, I mostly go to restaurants or parks where no one knows me. So, most days, it doesn't particularly matter how I look.
Some days, however, it matters a great deal. Like when I'm being paid $10-25K for a speech. Or when I'm creating videos that will be seen by hundreds of thousands of people. On those days, I need to look like who I am: successful, brilliant, and powerful.
Right now, my wardrobe says precisely the opposite. It's cheap, horribly fitted, and not particularly stylish. Really, I look like most other people in wheelchairs. You would never guess I am who I am.
To this day, stores and restaurants give me discounts on things without even asking. I guess they think I'm poor. Many people who don't know me also assume I'm mentally marsupialed, speaking to my caregivers instead of me, or when they do speak to me, they speak slowly and loudly as I’m deaf or something.
Most of the time, I think it’s funny, and it gives me opportunities to mess with people. Sometimes, though, it’s a big problem. Like in the business scenario I mentioned above. Lately, I’ve also been thinking about dating, and let’s face it, I need all the help I can get.
Like anyone, my wardrobe affects how the world sees me, but in my case, I think it might play an even bigger part. People might be less prone to treat me like I’m mentally marsupialed if I’m wearing a $2000 suit.
So, for the past few weeks, I’ve been pondering what to do. I can afford to hire a wardrobe consultant to completely redo everything, and maybe I still will, but I haven’t the slightest clue who to hire, and frankly, I seem to make many people in the fashion community uncomfortable.
I’ve approached three local tailors over the past week, and all of them were so thunderstruck by my physical abnormalities and unique requirements (having clothes that look good sitting down) that they began stuttering and dropping things. Each made polite excuses about why they could not help me.
Sounds horrible, but really, I don’t blame them. I’m guessing making me look good is going to be quite a challenge, and if I were in their shoes, I’m not sure I would want to do it either. I need:
1. Clothes that are made for sitting down, meaning they are both comfortable and look good. Sounds like a simple thing, but I’m guessing it requires rethinking the way different parts of clothes are made.
2. A tailor who will come to my home for any sessions requiring me to change clothes (it’s quite an ordeal)
3. A tailor who believes I can and should be allowed to look good. In other words, they can see beyond the wheelchair.
4. A tailor who enjoys the challenge of all the above.
Where do I find someone like that?
I’m guessing sites like modern tailor and whatnot are out of the question. For one, I don’t have any clothes to base new ones on. For two, I’m not sure the standard measurements are going to work as expected. I could try it, I suppose, but with my limited knowledge of fashion, it seems pretty far-fetched that it could work.
My only other idea is to start sending a photo of me with a letter to a bunch of nearby different tailors. Dozens of them, probably. Maybe one of them would raise their hand and volunteer to help.
I live just outside Boca Raton, Florida, by the way. Fort Lauderdale and Miami are nearby.
Any other ideas?
Just so you know, if we get a useful discussion going here, I’m going to make a few other successful folks in wheelchairs aware of this thread. You’ll be helping more than just me.
Thank you.
Jon
Because you see, I'm… unusual.
At 32 years old, I'm one of the oldest people in the world with Spinal Muscular Atrophy, a type of muscular dystrophy that almost exclusively affects children. While I have full sensation, I can't move anything but my lips and eyes. I have almost no muscle tone whatsoever, not to mention a bit of scoliosis, so the shape of my body is exceptionally odd. My stomach is twisted to the left, one shoulder is higher than the other, my chest cavity is deformed, my stomach pooches out (I can't hold it in), and on and on.
But I want to upgrade my wardrobe.
Over the last few years, I've gradually become one of the most popular bloggers in the world. Working online, using speech dictation software, I've built a multimillion dollar company with employees across the globe. I stay at home most of the time, and when I do venture out, I mostly go to restaurants or parks where no one knows me. So, most days, it doesn't particularly matter how I look.
Some days, however, it matters a great deal. Like when I'm being paid $10-25K for a speech. Or when I'm creating videos that will be seen by hundreds of thousands of people. On those days, I need to look like who I am: successful, brilliant, and powerful.
Right now, my wardrobe says precisely the opposite. It's cheap, horribly fitted, and not particularly stylish. Really, I look like most other people in wheelchairs. You would never guess I am who I am.
To this day, stores and restaurants give me discounts on things without even asking. I guess they think I'm poor. Many people who don't know me also assume I'm mentally marsupialed, speaking to my caregivers instead of me, or when they do speak to me, they speak slowly and loudly as I’m deaf or something.
Most of the time, I think it’s funny, and it gives me opportunities to mess with people. Sometimes, though, it’s a big problem. Like in the business scenario I mentioned above. Lately, I’ve also been thinking about dating, and let’s face it, I need all the help I can get.
Like anyone, my wardrobe affects how the world sees me, but in my case, I think it might play an even bigger part. People might be less prone to treat me like I’m mentally marsupialed if I’m wearing a $2000 suit.
So, for the past few weeks, I’ve been pondering what to do. I can afford to hire a wardrobe consultant to completely redo everything, and maybe I still will, but I haven’t the slightest clue who to hire, and frankly, I seem to make many people in the fashion community uncomfortable.
I’ve approached three local tailors over the past week, and all of them were so thunderstruck by my physical abnormalities and unique requirements (having clothes that look good sitting down) that they began stuttering and dropping things. Each made polite excuses about why they could not help me.
Sounds horrible, but really, I don’t blame them. I’m guessing making me look good is going to be quite a challenge, and if I were in their shoes, I’m not sure I would want to do it either. I need:
1. Clothes that are made for sitting down, meaning they are both comfortable and look good. Sounds like a simple thing, but I’m guessing it requires rethinking the way different parts of clothes are made.
2. A tailor who will come to my home for any sessions requiring me to change clothes (it’s quite an ordeal)
3. A tailor who believes I can and should be allowed to look good. In other words, they can see beyond the wheelchair.
4. A tailor who enjoys the challenge of all the above.
Where do I find someone like that?
I’m guessing sites like modern tailor and whatnot are out of the question. For one, I don’t have any clothes to base new ones on. For two, I’m not sure the standard measurements are going to work as expected. I could try it, I suppose, but with my limited knowledge of fashion, it seems pretty far-fetched that it could work.
My only other idea is to start sending a photo of me with a letter to a bunch of nearby different tailors. Dozens of them, probably. Maybe one of them would raise their hand and volunteer to help.
I live just outside Boca Raton, Florida, by the way. Fort Lauderdale and Miami are nearby.
Any other ideas?
Just so you know, if we get a useful discussion going here, I’m going to make a few other successful folks in wheelchairs aware of this thread. You’ll be helping more than just me.
Thank you.
Jon
