Hello my friends.
Today I thought we’d tackle something that will probably make some of you uncomfortable but please don’t be. My aim with my blog and social media accounts is to bring out the parts of disability life that many people don’t think about. I aim to give you a glimpse into my life and my story but it is just that my story. I don’t claim to know everyone’s experience but I do have many friends who are also living lives with disabilities or are close to someone who is and there are some things that many of my friends experience along with me and it’s really important to me that we talk about those things. Even though not everyone wants to hear about it. So now let’s get to it shall we. If you read my blog at all you’ll know I try to cover many issues affected by disability. I am a woman in my mid 40’s with cerebral palsy. This is what I know. My disability informs who I am. It impacts every decision I make. There is no “overcoming” the fact that I have it. One of the things that drives me nuts about well meaning supposedly inspirational stories on the news or social media especially this time of year (wedding, prom, and graduation season) are the ridiculous titles that exclaim how this person “overcame” their disabilities or illness and still tries to be “normal” because they walked across the stage using crutches or went to prom even though they may have had to do that using a wheelchair. I’ve rolled my eyes so many times it’s almost a reflex at this point. I’ve talked about inspiration porn at length on my blog and on social media everywhere. I could probably write a book on my experiences with it by itself but that’s for another day and another post. If you haven’t heard the term inspiration porn before I urge you to google.Stella Young and her ted talk. It’s fabulous. Plus at least in the beginning of her talk you’ll get a pretty good example of an audience who doesn’t know quite how to react to what she is saying. You can almost here the room collectively saying oh hey that’s funny., but is it wrong and mean if we laugh. When I write about or discuss my experiences with people especially people who I’m not particularly close with, they often have that same sort of reaction.
I’m used to it ,but if the person recovers quickly and learns from our conversations we can move on to the stuff that really matters like how do they take their coffee. Since I’ve had the blog and several public social media profiles I’ve gotten many comments mostly in the form of emails or messages..Most of those messages are kind and amazing or tell me that they have learned something. Yay! But I also get messages informing me that they don’t think I’m disabled. And then they usually give me a reason based on what their idea of what it means to be disabled. For example, “Who types for you?” Handicapped people can’t type.” Because I’m too positive. “I’ve never met a disabled person who didn’t want to be normal” “I don’t think you are special needs because you don’t talk or write about your struggle enough.” “I’m going to stop following you because you give people false hope” I don’t want you to think dear readers that this is strictly a nameless faceless internet troll who gets their kicks from saying weird things that they’d never say in face to face because it happens other places too Fortunately Scout takes a lot of the focus off me in public because he is awesome and most people are more interested in him then in my particulars. But it has brought up something I hadn’t entirely expected. Even though he is not my first service dog it still surprises me when I hear “Are you sure that’s a “real helping dog? You don’t look handicapped enough to have that dog.” Which led to this entire story about how they knew somebody who knew someone who had a helping dog but that person was really handicapped and couldn’t walk (lots of details not much substance). The person in the coffee shop who demanded that I make Scout show what he could do because they had never heard of anything other then a guide dog. They actually accused me of lying because they were sure that a mobility dog (which I’ve started saying because he isn’t a guide dog. Technically a mobility isn’t right it’s more descriptive ) wasn’t a thing. The person standing outside the local store who I didn’t notice and wasn’t speaking with until they said “ I hope you don’t expect people to let you take that dog in with you.. People have allergies you know.” So yeah, it’s become a pretty consistent thought in my head that for some people I’m not disabled enough to be an authority on the experience of living with my cerebral palsy. But these same befuddled people want me to be sure and understand I an “special needs” and blessed (the whole calling me special needs deserves its own post too) Even so I just cannot expect the world to help me. (Strangely I believe in a higher power that wishes me to help others ... but I guess that’s not their creator) Then these people wait to see what inspiring tale I’ll tell them or figure in that they can repeat at dinner that night.
Let me break it down for you friends, since my head very often spins about this as well. I mean seriously this is ridiculous . In a mostly able bodied or healthy world there is a large segment of our society that believe with all their hearts and minds that those of us with disabilities or illnesses are unable to understand or tell our own stories. I am apparently too disabled for my thoughts and opinions to matter on my life in general. I am also accused being too capable to speak on issues related to being a disabled person. Now honestly I don’t care what other people think I am or should be. If I don’t know a person to do more then smile or nod as we pass ... their opinion does not matter. I’ve always been that weird person who will gladly get on stage and perform. I loved any public speaking opportunity I’ve ever had. I put myself out there on the internet and talk about things a lot of people won’t touch with a ten foot poll. I don’t give strangers opinions of my life or my disability or my service dog much space in my brain. But I will admit to giving a little bit of thought to the idea that uninformed people need to pick a direction. What is it that they want from me? Education is one thing but as a friend recently pointed out some uniformed people hold very tightly to their beliefs and that’s how they want it. I honestly have had an epiphany lately. Life is to short and I have too many things to do and too many kind and interested people in my life who want to have conversations that matter. But I am still me and so I did think about how I would have liked to respond in each case. Being a disabled person out in public can be physically exhausting . Not to mention the emotionally taxing part that is constantly having to deal with people who feel you must justify your right to live your life in a way that works for you. Keep in mind my friends that I don’t mean that I feel the need to attend every interaction I am invited to. But as a person who does not blend into the background. I am sometimes forced into conversations I would not have otherwise. I hope the the fancy scooter with glitter stickers and big amazing friendly yellow lab send the message that I’m not really worried about how well I blend . Some people though feel the need to tell me what they know about me. Sometimes the stop me in public to tell me what I should wear, how I should.conduct my business, what a real “helping” dog does, or how I should spend my money. That’s just a small list of what I and others with disabilities hear. Because people feel secure in the knowledge that they know us and have the right to tell us things. As if I a disabled person am fair game just by daring to be in their presence. Sometimes I attended those arguments and sometimes I don’t Depends on my day and my mood. Of course some people get louder and angrier if I leave a conversation before they are done telling me about myself.
What I am reminded of most days is that that says more about the people who behave that way then it does about me or any of us with disabilities but that knowledge is little comfort in the moment. So if you don’t like the way I tell MY story then you probably shouldn’t read it. In fact instead of making comments or sending me messages about how my way is wrong. Why not get out there and tell your own story. If someone’s only goal is to try and make someone else feel bad about themselves they will clearly will find me annoyingly positive. Or perhaps it will bother them that I’m not angry or depressed or striving to be more “normal” For those people I’m not sure what it is about me or the way I tell my story that makes them squirm so much they feel justified in trying to tell me how I need to do me. And honestly except for the minute in which I am having to deal with that person and or their comment. I don’t care The most horrible thing I can do in the minds of people who approach me in this way is to ignore them entirely. I’’ll keep my mostly positive attitude. I’ll continue to fight against the. “amazing inspirational disabled person” that these kinds of people want to be my one and only job. I’d be terrible at that by the way I complain way too much .Because really now who has time for that pressure. I’ll leave the inspiring to people who feel comfortable in that role and can handle that pressure with grace. My friends never ever let anyone tell you how to tell your stories or how to be your true self.
Keep doing you 🐾💚😊
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