It's been one year since I was diagnosed with MS. It didn't sink in until my neurologist told me she was going to write an order for a handicap placard.
"A temporary one?" I asked.
"Nope," she said.
Now I was officially "one of them." The weakness in my legs couldn't be cured by working out or trying harder or convincing myself I was well.
I've gotten interesting comments and lots of stares when I go around with a cane, walker, or wheelchair, and I've heard that people are afraid of offending me and are not sure what to say. Even though I hate standing out like I do (and every time I go out, I mentally gear up my smile and polite "hello" for the looks I'm going to get), I'm starting to accept it.
The thing I don't want to do is be offended by people who don't know what to say, so they say something insensitive. How would they know, unless they've been in my shoes? I am positive I said some of the same things when I was able-bodied.
A message to those who stand out in a crowd...
We, those who stand out from the crowd and get looks or comments for any reason, have a responsibility to represent our group by always responding with grace. Very few people are outright rude; they are curious, perplexed, surprised, and they are often afraid to say anything for fear of offending. Isn't that sad? We're turning into a group that pushes people away, people who are trying to understand. I've been guilty of ranting about well-meaning people with insensitive comments too.
A message to those who don't stand out in a crowd...
I realize not everyone has the same preferences as me, but maybe it will help you see where we're coming from with our thought processes.
1. In public, a person in a wheelchair catches your eye. Do you quickly look away so they don't feel weird about their chair? Do you stare at the chair and look at their legs to see if they should really be using an automated cart? Do you smile and say "hello?"
I love the latter response! The first two remind me that people see me as a chair. The third reminds me that I am a person!
I catch a lot of stares in public, so when I make eye contact I smile and say "hello." There is nothing more hurtful than when I do this and the person just walks past, either staring or ignoring, face frozen.
2. I love questions over observations! I prefer "How do you feel today?" over "You look like you're feeling really bad today." Or, "What is it like to be in a wheelchair?" over "You're too young to be in a wheelchair." Observations leave me with no opportunity to respond; I can either agree or disagree or just smile. But questions let me have a conversation!
Here's another way to explain it: Observations make me feel like I'm being evaluated. I want people to see me! This may sound cliche, but I don't label myself as having MS and often forget I have it. It's part of my life just like your troubles are part of your life - mine is just more visible.
I really, REALLY hope this is helpful to both disabled and able-bodied folks without offending anyone!
"A temporary one?" I asked.
"Nope," she said.
Now I was officially "one of them." The weakness in my legs couldn't be cured by working out or trying harder or convincing myself I was well.
I've gotten interesting comments and lots of stares when I go around with a cane, walker, or wheelchair, and I've heard that people are afraid of offending me and are not sure what to say. Even though I hate standing out like I do (and every time I go out, I mentally gear up my smile and polite "hello" for the looks I'm going to get), I'm starting to accept it.
The thing I don't want to do is be offended by people who don't know what to say, so they say something insensitive. How would they know, unless they've been in my shoes? I am positive I said some of the same things when I was able-bodied.
A message to those who stand out in a crowd...
We, those who stand out from the crowd and get looks or comments for any reason, have a responsibility to represent our group by always responding with grace. Very few people are outright rude; they are curious, perplexed, surprised, and they are often afraid to say anything for fear of offending. Isn't that sad? We're turning into a group that pushes people away, people who are trying to understand. I've been guilty of ranting about well-meaning people with insensitive comments too.
A message to those who don't stand out in a crowd...
I realize not everyone has the same preferences as me, but maybe it will help you see where we're coming from with our thought processes.
1. In public, a person in a wheelchair catches your eye. Do you quickly look away so they don't feel weird about their chair? Do you stare at the chair and look at their legs to see if they should really be using an automated cart? Do you smile and say "hello?"
I love the latter response! The first two remind me that people see me as a chair. The third reminds me that I am a person!
I catch a lot of stares in public, so when I make eye contact I smile and say "hello." There is nothing more hurtful than when I do this and the person just walks past, either staring or ignoring, face frozen.
2. I love questions over observations! I prefer "How do you feel today?" over "You look like you're feeling really bad today." Or, "What is it like to be in a wheelchair?" over "You're too young to be in a wheelchair." Observations leave me with no opportunity to respond; I can either agree or disagree or just smile. But questions let me have a conversation!
Here's another way to explain it: Observations make me feel like I'm being evaluated. I want people to see me! This may sound cliche, but I don't label myself as having MS and often forget I have it. It's part of my life just like your troubles are part of your life - mine is just more visible.
I really, REALLY hope this is helpful to both disabled and able-bodied folks without offending anyone!
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