mkzh

I'm a Software Engineer with the same condition as Mats (Duchenne). There are many others like me as well with in this and other professional industries.

Severe physical disability isn't a complete social and economic dead end. But it is a tough path that I wouldn't wish on anyone. I can say that a "normal life" does still seem to be largely out of reach for us. The worst of it is by far the lack of independence that arises from needing care around the clock. But it's definitely not hopeless. I'm lucky enough to have a good community in my workplace, and very enjoyable work to fill up my attention. This prevents me from thinking about disability too much.

She makes some great points. As a quadriplegic, I can definitely relate to

1. People expressing pity. This doesn't always need to be verbal, the look people give me is sometimes all it takes to remind me that I'm not "normal".

2. Being called "strong" or "brave". This is frustrating not because I think it's not a genuine compliment, but because it genuinely isn't true. I certainly don't consider myself an exceptionally inspirational person: I just try to live a normal life like any average schmuck in the upper-middle class in a first world country. I may have had the misfortune of being born with a disability, but in many ways I've been exceptionally lucky: born in a moderately wealthy family, academically nurtured by good teachers, granted an Ivy-league education as a result of good teachers, and given a comfortable career in BigSoftware as a result of said education. Nothing in my life is exceptionally off course from that of a pampered son -- aside from my lack of arm or leg function.

3. Restaurants and stores lying about their accessibility. This is a huge problem with review sites and often is a stark reminder that the world fundamentally wasn't designed for people like me from a UX perspective.

This article also captured a lot of my concerns with dating as a disabled person. I realize that any woman I get into a relationship with has to, in a way, endure my pains as a disabled person. That the pity, genuine-but-wrong compliments and the wrenching realization that the world is for the ambulatory easily spreads like a disease from me to the people that I love.

It's definitely frustrating. I am glad that she seems happy with her marriage for now though. As a quadriplegic, I know that we don't have a good track record for happy relationships, which has always been something that keeps me up at night. Steven Hawking [1] and Christy Brown [2] are two examples of quads I can think of who have been known to have less-than-fulfilling marriages.

I hope that I can do better, but for now I'll just focus on being a better software engineer so people have something else to look at besides my disability :)

[1] https://en.wikipedia.org/wiki/Stephen_Hawking

[2] https://en.wikipedia.org/wiki/Christy_Brown