I am a part of a Facebook group for people with my disability (2 actually, one specifically for females). It’s amazing, honestly, what the Internet makes possible. Growing up I didn’t know anybody else that had my disease (Spinal Muscular Atrophy aka SMA) and now I could name probably 15 without batting an eye. It makes it much easier to compare notes, form friendships, and learn #disabilitylifehacks.
However, there’s one recurring theme in this groups that I honestly don’t understand – it’s the aversion to the word “inspirational”. Not even just the word – the concept. There’s something that, until the past few months, I didn’t even know existed known as – apparently – “inspiration porn”. This isn’t nearly as good as #foodporn, and I’m not even sure that right now I understand what it is. As far as I can gather, it’s the resentment caused when able-bodied people look at someone they perceive as less fortunate than them and get a warm feeling inside by helping them. It’s almost always done with good intentions, and often it’s not something the able-bodied person even realizes they’re doing.
So why are disabled people mad about it? I guess if I look at it objectively, I don’t want to be seen as someone who deserves to be pitied. I mean, given the situation I live an extremely comfortable life. But if my disability gives other people pause and asks them to take inventory of all the blessings they have in their lives, who am I to stop them? Just as I look at someone with cancer and inspired by their positive attitude, so too can others look at my inability to walk and do the same thing. Anybody who tells you their disability doesn’t make their life more difficult is lying to you, or in denial.
I once read a Facebook status written by another girl with SMA about how she was angry because someone she didn’t know asked to pray for her. She wrote that she didn’t need prayers, and that prayers wouldn’t heal her, and she was doing just fine on her own. Now I don’t go to church every Sunday (or even every month) but I do know that we all need prayers. She isn’t wrong that praying and faith won’t give her the ability to walk again (if only it were that easy), but there was so much hatred in her words. I am a firm believer that praying with somebody, whether it’s to heal you physically or spiritually, has never hurt anybody. Sure, maybe that woman may have just checked “help an invalid” off of her to-do list – or maybe the experience would have stayed with her more permanently. Maybe the spirit of helping others would have prompted her to volunteer to drive those with disabilities to appointments, or to donate to a research program.
Every interaction that we have with another person gives us the opportunity to shape them. It can either be positive or negative. I would like to think that I can be “inspirational” without being pitied. I can be a reminder that maybe having the wrong paint color isn’t the worse thing that could happen to a person. And I’m okay with that…I guess you could call me an inspiration porn star.