This blog is in response to my post a while back about a fist bump ?? . I was at a casual restaurant outside eating with my husband and a man looked at him and gave him a fist bump. Things like this happen because people often give Chris accolades for being with a girl in a wheelchair. Like it makes him an extraordinary person for dealing with me. People say, oh he got that fist bump because you were hot. No. I looked chill and my hair was crazy. I was surrounded by beautiful women in bikinis with their boyfriends.
I am a public figure in the disabled community. I don’t just say things to get them off my chest, I say them to educate about misconceptions and stereotypes. Certain gestures and treatments alone might be fine but often they come from people well meaning who might have misconceptions by no fault of their own. I was able bodied for 24 years and hurt for 9. So many things happen to me that are well outside social norms that I recognize because of my very unique perspective. Something that maybe only .2% of people have on this earth.
I have the perspective of being able bodied and disabled at a young-ish age in my lifetime. So someone who is able bodied will have a perspective, someone who has had a disability their entire life might have a perspective but it is a unique perspective to have a before and after. And it is night and day.
I know many of you are trying to be nice in the comments by saying I’m just pretty and that’s why they did it. But I ask you truly would you ever walk by a couple at a restaurant dressed in T-shirts and give a nod to a guy and fist bump with no dialogue. And ladies, has a single one of you ever had their man get a nod with a fist bump as you were at a restaurant in a T-shirt? These things just don’t happen in an all able-bodied world.
Maybe if you were introducing me that could be the case or if we were in the same group of friends etc. but nobody walks up to a stranger and does that in the middle of lunch. It is not the fist bump. It is the misconception behind gestures like that. What if there was a couple at dinner and the wife clearly had cancer or some kind of disease. The guy gets a fist bump. Is that appropriate? I’m not downing myself by no means but the pictures below is what I look like on a daily basis. And I was a little younger here. Am I unattractive? I don’t think so at least I hope not. But I’m not high five worthy in these photos.
One time we were walking and a man did not even acknowledge me but shook Chris’s hand and said you are my hero. I can’t begin to tell you how awkward it made Chris feel and how small it made me feel. That it would take an extraordinary person to be with someone like me. I know a girl who was in a relationship and her boyfriend got these nods/handshakes but he was extremely physically abusive at home. It is not only extraordinary people who happen to be dating someone with a disability. And it’s demeaning to the person with a disability when they are completely ignored and their spouse is given accolades for being with them. (Below: reality vs Instagram)
And one of the comments on a post where I was explaining an uncomfortable scenario, there was a guy saying I must not be OK with myself. I’d like you all to compare the negative posts in a ratio to all the positive posts I make. I could have seriously a month of really beautiful pictures and fun updates and then I will say one thing that isn’t really positive or maybe it’s a bad experience I’ve been through and I will literally lose followers and be attacked in the comments.
No one can be expected to be positive every single day. It’s almost like people with disabilities are expected to be extraordinary and inspiring all the time. If they say that something bothers them it’s just that I’m being whiny. I would also like to point out that these posts aren’t just me complaining about my life and my experiences. This is a page about education and there are many people who have my exact perspective who feel the same way. Many people who don’t have a voice at all but really wish the able-bodied community would know how these things make them feel.
Maybe you’re in my situation and don’t feel the same way and that is fine. But in multiple groups, in multiple blogs and amongst all of my friends who have a spinal cord injury, the majority of us feel this way. I’d also like to add that a majority of our spouses feel uncomfortable as well. Whenever these out of the norm gestures happen, it makes both of us remember the injury. Remember, I’ve been hurt for a while so I’m not running around constantly thinking about being in a wheelchair user or a quadriplegic. But when you’re at the club with a group of your girlfriend in a circle and smiling and a random person comes up to you and says I think it’s really cool you’re out you’re an inspiration… it reminds you that you are different. That you must be an inspiration because you are out with your friends.
He was completely well-meaning and was super nice. But it does come from a misconception and stereotype that people in wheelchairs don’t really go out and have fun just like anyone else. It’s when you’re sitting in a courtyard, with your cell phone and all of your shopping bags, enjoying the weather and someone kneels down and asks if you need help. Are they super nice!? Absolutely! But it comes from the misconception and stereotype that not a lot of wheelchair users go out alone.
As an able-bodied person have you ever been called an inspiration for being at the club? Have you ever been sitting in a courtyard with your phone and shopping bags enjoying the weather and a stranger come up to you and ask if you need help? It’s when you’re at a football game and your on your phone waiting for your husband to come out of the bathroom..and a man asks if he should stand with you. Like I literally can’t be alone for 3 minutes. It’s when you can’t go to the gym without someone stopping you to congratulate you for being there. Again all super nice things but they are outside the social norms and because I have both perspectives… I know this.
So please don’t diminish the feelings of someone who has a completely different perspective than you. Please don’t be annoyed at how they feel because you would not know how you would feel if tomorrow you had a spinal cord injury and these things popped up. They are all reminders of my injury and in a perfect world I would just be seen like everyone else. I know this will never happen but this is a tiny piece of the Internet that I can talk to and educate. Things like this don’t totally ruin my day. I’m a really confident person who in my world is completely aware that I help Chris just as much as he helps me. I know he needs me as much as I need him and that’s a beautiful thing. We are both a hero in our relationship.
instead of making excuses for these actions, realize I know people are nice. Realize that I know it’s better then being mean. Realize i am comfortable with myself and that I also don’t think these people suck. But Aldo acknowledge my feelings and the feelings of others.
If you’re confused and don’t know what to do and how to act, just remember the golden rule, treat people with disabilities the exact szme way you’d treat an able bodied person. If they are truly struggling ask one time if they’d like some help. If the answer is no, then accept that. Don’t walk up to a person and ask if they’re ok simply because they are alone.
Just be normal ?
First I love the education. And I’m not disagreeing with you cuz I’m not in a chair. We had two particular friends in chairs the guy was a quad and his wife was able to move a bit she has MD. When they got married we rarely got them out. Mainly because it was so difficult for her to use the bathroom facilities. So it is true people in chairs sometimes need provisions, so we don’t often see them at, say a bar. So you become an anomaly. And I believe kind people are drawn to you, luckily. But, by not main streaming kids with disabilities back in the day, makes for this unusual connection! People have not been taught how to interact so they go with kindness and at times it can be a bit annoying. I’m excited about your blog and all the great info you might share. Congratulations!
This is so true. My boyfriend is a paralyzed veteran and I can’t get over what people say to him or me at times.
My favorites are
1. “wow, your wife must be amazing you look so good. She must take care of you really well!” – we aren’t married and don’t live together.
2. “Can your boyfriend work?” – Yes, he has his Master’s degree and a good job. Jeez.
3. The best one EVER! “Does everything work? Ya know what I mean!” – why is our sex life anyone’s business but to answer that – YES! YES! YES!
I fully believe your head is screwed on right… however, there’s a lot of people who just don’t know how to behave around a disabled person. Probably not their fault – it’s just a lack of experience. It’s up to us to draw our lines in the sand (which you do beautifully!). I was a middle school teacher when I first had to use a wheelchair. My kids were curious, and I answered a lot of questions. At the present, I’ve lost all eight fingers, and I still get a lot of questions (which I still answer). Life goes on, sweetheart, and you’re doing just fine!
OMG yes! I get so irritated when the umpteenth person says I am inspiring and expects me to smile and feel complimented. They are impressed that someone in a wheelchair can be in public and do ANYTHING! Stop already and just allow me some normality. Grrrrr. You said it beautifully.
Thank you so much. You just explained my life.
It’s as if we were aliens…I just came upon your blog and I was pleasantly surprised by your point of view. I too have a similar perspective having had a TBI at the age of 34 that left me paralyzed on my left side but since that injury I have had other issues that have left me even more compromised and my condition has become more complicated and complex. I was a single mom raising a family and working, dating and actually being an advocate for children with disabilities. At this point I have raised my 4 children to adulthood and am presently raising 2 of my grandchildren. People who are trying to be kind and encouraging to me are constantly asking me how I do it.
My question is always the same ( in my head mostly)…would you ask me this if I wasn’t visibly disabled or would you approach me like you are. I have way too much to say about this issue to post here so I’m going to close by saying “thank you for sharing ‘our’ opinions…”.
Ugh…yes!! I have Spina Bifida. When I walk, I don’t walk very well. Something is noticeably wrong and sometimes I use a chair. I’ve had people hug me, I’ve had people say “way to go buddy” as I was walking into the pharmacy. It’s just so awkward. Like…who does this kind of thing? One time, I had a waitress say to my wife “does he need a menu?” ?. We have a long way to go in teaching society how to act around people who are different….
I have been in a wheelchair for almost 47 years, and I had a daughter after my accident and a son before! I have been very active all my life. My 1st husband died in the accident along with 2 friends who also passed! Glad I found you blog!
So sorry to hear about the accident. OMG that’s just awful! I am super glad you found me and I hope my blogs are relatable!