don’t you dare “just say hi.”

for blog hi

Four words: I. HAVE. HAD. ENOUGH.

I think that the strangest days of our lives might be the ones where an irrevocable change happens. But nothing major occurs to incite this irrevocable change. Just something small, something seemingly meaningless. Like an link on Twitter.

Before I type any further, and before your blue and brown and green eyeballs scan any more words on this screen, I want you to know something. I don’t not intend for this post to come across as angry. Or mean. Or harsh. Or preachy. Or as an overreaction. But still, that may be the perception of some – and that’s the thing about perceptions, you can do not one single thing to change one that doesn’t belong to you.

With that said, I also need you to know this other thing: I. Am. Upset.

This morning, before I got out of bed, and drug my sleepy, heavy-headed self into the shower, I saw a link on Twitter containing this video right here. 

I’m going to go for complete candor here, and say that I angry-cried all the way through my shower after watching that video.

I know in my heart of hearts that this campaign was born out of the sincerest and best of intentions. The people at the Cerebral Palsy Foundation are not my enemies, they are on my team. But what I don’t think they realize, is just what a sacharrine piece of ableism this is.

Ableism, by definition means “discrimination in favor of able-bodied people.” In real life, ableism is the notion of the inferiority of the disabled. The notion that we should change and adapt to the ways of the abled, that we should change and adapt so that we do not make others uncomfortable with our differences. The notion that we do not have the same rights, hopes, dreams, and desires as does someone whose body is on their side 100% of the time. The notion that those of us who walk and talk and look and think and LIVE differently than everyone else in these precious bodies of ours are inferior or unequal or not worthy.

What I need to ask is, did the Cerebral Palsy Foundation even bother to consult a single individual with actual Cerebral Palsy before coming up with this and blasting it all over the media? They couldn’t have. Because I don’t think, that in my 23 years of life, that I have ever seen something so blatantly dehumanizing and patronizing. I mean, could you not just hear the condescension dripping from their voices?

In case you weren’t aware, these fine folks were doing a giant favor to humanity by going out of their way to speak to some poor, sad person with a disability. Can you believe it?! I bet that person with a disability feels so much better about themselves now. We can all pat ourselves on the back for doing a good deed, have a little #blessed moment because their pitiful disabled existence has made us feel sooooo much better about ourselves. Man, I’m so proud of myself for being so kind and charitable. Congrats to me on a job well done.
What a crock of crap.

Here’s the thing, I’m about to get real. As if I wasn’t there already.
I have been on the receiving end of this bullshit. I have been stared at. Gawked at. Spoken to in a tone that is normally used for babies, puppies, and kittens – none of which possess complete cognitive faculties. Right in front of me, full grown adults have asked ludicrous and insulting questions about my disability to whomever I was with, as if I wasn’t in the room or couldn’t hear them. I’ve been asked (or rather, someone I’m with has been asked – because I’m obviously not capable of answering questions), or it has been assumed, that I have an intellectual developmental disability as well. “What’s wrong with her?” “Why does she walk like that.” “What happened to her?” I’ve been given pity gifts on the streets of cities. Respect of personal space is questionable, because I’ve had strangers come up to me with tears in their eyes, say nothing, and simply lay their hands on my shoulders, arms, or legs, as if I’m some sort of supernatural phenomena. Talk about making someone uncomfortable. I’ve had strangers approach me in restaurants and patronizingly ask if they can join hands and pray for me. Right there, in the middle of a restaurant. Because obviously, there is something wrong with me. They don’t even know me. Whether I’m walking, or in a wheelchair/using another ambulatory aid, people will stare until their eyes bug out of their heads. Or better yet, avert their eyes like it hurts to look at me.

I have had it up to the top of my curly head with this nonsense. I am sitting here, right now as I type, wrapped up in a mustard yellow throw blanket bawling my eyes out. Why?
Because my heart is broken. My heart is not broken because of this ignorant campaign. It’s broken, because today I realized that I live in a world where a freaking social media campaign is needed to TEACH people how to talk to me. Let me repeat that: I live in a world where people must be TAUGHT how to speak to me.
Because I am too foreign, scary, attention getting, and uncomfortable to naturally be approached. I am ET, an alien. I am inhuman. My very presence is so jarring to other human beings that they need a special instruction on just how to communicate with me.

I am going to be very clear about a few things right now. Absolutely nothing is WRONG with me. I am not meant to be seen as a cripple, as someone who is broken, as someone who is less than a human with two perfectly functioning legs and one perfectly functioning brain. I am not a unicorn. I am not special. I am not here to make you feel better about yourself. I am not here to make your realize how blessed you are. I am not an inspiration.

I was irrevocably changed today because a part of me broke inside, and I won’t ever be the same for it. And I was affirmed in something that I have known along. I will not stop, as long as there is a breath in my little body, working to see that those of us who are different sure as hell aren’t treated as such. For the rest of my life I will not stop trying to make this world a better and more hospitable place for anyone who has a body or a mind that they fight against on a daily basis. I will never, ever, stop fighting for the unconventional peoples of this lifetime and all the ones that come after it.

And to anyone who is reading these words, don’t you ever dare to “just say hi” to me. You want to talk to me? Ask me about my dreams, ask me how I like my tea. Ask me about my cat Sullivan, or tell me that I have beautiful hair. Ask me about what I hope to change in this world, about my favorite movie or book, about the two degrees I earned. Tell me you like my dress, or my shoes. Ask me about the kind of change I want to make in this world. Ask me about the people I love. About what I want to fix that is broken, about how I want to leave this life better than I found it. Kindly ask me, if you are curious, why my funny little legs work the way that they do. I will be the happiest to answer that question. But you’d better not “just say hi” to me. I am not here to make you feel better about yourself. I am not here to be your good deed for the day. I am a human being. Get to know me and all my glorious imperfect mess if you want, or don’t – that’s okay too.

But don’t you dare “just say hi” to me. Don’t you dare.

46 Comments

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  1. Hmm. Maybe THEY were ‘high’ when they came up with the name for the campaign. On a more serious note, some (more) thought needs to be done behind campaigns like this clearly. I think I understand why this bothered. My sister has autism and I get a lot of “but she is SO normal” and I think to my self; this is not a compliment. Please stop.

  2. You are not alone. And i agree. Get angry and affect change.

  3. Just like you, an individual with a physical disability, people with intellectual disabilities (“mentally retarded”) are human beings and worthy of respect. By saying you’re not one of them (i.e., “retarded”), you’re essentially devaluing people with intellectual disabilities. I think you could have communicated your message without making the references to people with ID. BTW, intellectual disability is the preferred term. For many people, retarded is hate speech. Why? MR was originally a medical term but now is commonly used as an insult. Using the term only serves to perpetuate the belief that individuals with ID are less valued members of society. I have a son with ID and cringe when I see the word in print. While I love what you have to say in your blog post, I ask that you visit the website Spread the Word to End the Word (http://www.r-word.org) and consider NOT using the r word in future posts. Thanks for listening!

    • Thank you so much for this. I have made an error in judgement here, and thank you for bringing it to my attention. I spent the past year working from 9-5 every day with adults with intellectual developmental disabilities. It was a year that truly changed my life for the better and I have so much love and respect in my heart for that population of people. I never want to stop fighting for their rights and equality either, and I made a mistake with the wording of my post.
      That’s what happens when you write with too much anger and emotion, sometimes you callously say things you don’t mean. I didn’t intend to devalue anyone, but I also don’t appreciate strangers assuming that I have an IDD just because I have a physical one. I never meant that word as an insult, but you are right – it shouldn’t be used in any circumstance. I’ve changed the wording of my post, and again – thanks for reading and thanks for calling me out. It needed to happen. We are are all on the same team 🙂

      • Personally, I appreciated your sharing how people made assumptions regarding intellectual disabilities. It’s an important aspect of stigma and ill-treatment that affects many different sorts of disabled people and should be shared IMHO. Not that we are sometimes seen as having ID whether we do or don’t, but rather; that abled people have made a habit of misidentifying and misunderstanding ID and then being incredibly patronizing and unhelpful toward whichever target they’ve picked and see as lesser and pathetic.

      • Thank you! You’re right, there are too many misconceptions and misidentifications of IDs. Being patronizing is never appreciated, not matter the situation 🙂

  4. Bravo!

  5. So I see this in a total different light then you are. While I am not a person with a disability, I am a person who is very active locally and online in the disability community. I huge part of this is because this is where my heart and my photography have led me.
    Now, this beginning of this begins with “how to start a chat with someone with a disability” it is not just suggesting that you start a chat because someone has a disability.
    Truth of the matter, a lot of able-bodied people think that they need to approach someone with a disability differently, or they are just afraid to do so. To illustrate this, let me share this true life example with you: A couple years ago, I had a middle-school aged boy who knew that I had a lot of knowledge with disabilities tell me how there was a new kid at school who used a wheelchair and had a hard time talking and he wanted to approach this boy and make friends. He asked how to do it. I turned the question back to him and asked “if he was not in a wheelchair, and did not have a speech problem, how would you approach him?” He said he would just walk over and introduce himself, to which I asked, “why is this any different? He’s just a boy who happens to have different challenges in life? He said OK. These two boys are best friends today. And the conversation started with a simple “Hi”
    And that is exactly what this campaign is pointing out. They are not saying to just say hi because someone has a disability, rather they are trying to help you break that barrier that may make people feel that someone with a disability is difficult to approach. It’s helping to remove the “uncomfortable” from it. And, honestly, I don’t understand why so many people are so uncomfortable with disabilities, or rather, the people who happen to have a disability.
    Remember, this campaign is “How to start a conversation” not how to end it.

    • I checked out your photography, and think that what you are doing is a great thing.
      Where the hurt comes from in me, is that the “uncomfortable” barrier that you mention is even a thing in the first place. I want to live in a world where communicating with a person with a disability comes second nature to anyone and is a nonissue.
      Like I said in the post, I think that campaign came from the best of intentions. It was just incredibly ableist and executed poorly. The tone of their voices is insulting and absurd. But I appreciate you sharing your thoughts, and thank you for taking the time to read and comment!

  6. Your passion and honesty are going to- and already do- make a difference in the world. I’m so sorry for all of the ways people make you feel different by the way they act, but it’s also so beautiful how you let that crap fuel your words for good, intentional change. God has set you apart for something special and I hope I will someday get the pleasure to meet you!

    • Brianna thank you for being so sweet and thank you for always being an encouragement to me! You’re right, I’m just doing by best to following God’s calling to fight and speak and advocate for all the unconventional people out there!
      You are the sweetest and I hope that our paths will cross one of these days!

  7. Thank you for being so honest, I can only imagine how patronizing it must be for you when people to speak to you and treat you as they do. My Dad had a severe stroke 25 years ago and lost his speech, people still talk over him as though he isn’t there and can’t hear them. Sometimes I just want to shake people and tell them that he is not retarded, he can hear you. It would be an honour to meet with you someday.
    Lizzi xo

    • Lizzi, thank you so much for reading and sharing your kind thoughts!! I am sorry that your dad goes through that, please let him know that there are people standing in his corner! It would be so great to meet you, and I hope our paths cross one of these days!

  8. squiresproductions October 24, 2015 — 9:05 am

    “Hi” is an icebreaker. The sheepish masses need to be told that it’s okay to say hi to someone with a visible disability. Sad, but true. So just move on. No need to cry about it. I don’t have time to ask you about your dreams or hopes or aspirations. Or perhaps I do and I just couldn’t give a shit. That goes the same for 99.99% of the assholes out there though, able or otherwise.

  9. Here is my take & what I responded to an FB post that felt yours was a “ridiculous rant”.
    🌟The video posted seems incomplete or too simplistic without the intro of the moderator and I understand the feelings of the girl who was upset. The video doesn’t really talk about having a conversation but seems to encourage people to Just Say Hi if you see someone with a disability. Why should starting a conversation be any different than what you would do when talking to an able bodied person? “Nice shoes!” Or “Do you know a good place to eat.” Or “I just moved here & don’t know the bus system, can you help me out?”
    Stop with the pity party crap or fear or whatever keeps people acting like disability is freaky weird horrible. I am sure if my disability was a visible one I would have experienced more of what she has. But it isn’t so I am going to take her word for how she feels. Nobody has the right to invalidate that for her.🌟
    Rock on Girl & keep sticking up for yourself!!!

  10. Wow, this is truly terrible. Any sort of disability awareness should never come at the cost of disabled people themselves.. Ugh, so condescending.

  11. Hello (please notice I didn’t use Hi 🙂 ). I found your article randomly surfing on the web. Too bad that something that is supposed to make some good, finally hurts (even if you know it was done with best intentions).

    But maybe the condescencion in their voice is not adressed to disabled people ? I think that you could see it as a condescencion to those people who speaks to disabled one with that voice…

    OK… I know, not belivable. Trying to make you smile.

    After reading you’re article I really hope that I’ll never make someone feels what you described, I think that I don’t make a difference, when I speak to someone ‘body-able’ or when I speak to someone in a wheelchair but after reading this article I have a doubt… Do I say “Hi” or do I say “Hiiiiiiii” with my head inclined ? I hope I do the first… I don’t like the second idea.

    And by the way I’m really sorry to tell you that I find you are an inspiration, not because of your CP but because of your ideas 😉

    PS : sorry if I used some words poorly I’m french.

    • This comment really made me smile 🙂
      The whole point of this point was to make people think – and I hope it’s done just that. Thanks for being thoughtful in your response, and I think your English is just great. A great deal better than my French, that’s for sure 🙂

  12. Excellent!! I had a stroke a year ago. How people treat you is unbelievable at times.

  13. I also have Cerebral Palsy and generally don’t have a problem when most people ask me questions or want to know more. However like you talked about above it absolutely makes me crazy when people seem like they are congratulating themselves inside because they talked to me, usually it feels like those people are talking at me and not to me. I’m sure you can identify. The time that still irritates me just thinking about it a lady from some random church talked to me and straight out said that if I had true and real faith that Christ would “heal” me. I am religious myself, but that kind of belief makes me crazy both as a person of faith and someone who has real physical challenges. I strongly dislike it when people patronize me because they think they know better than I do what my abilities and challenges are. Every time I see a campaign like this it makes me crazy! Thanks for clearly vocalizing so many of the same thoughts and feelings I have.

    • Char, I love this! Thank you for reading. I absolutely love for people to ask me questions about CP, or to engage me in conversation. I really love it. But, the key is the way that is done. I will not tolerate being dehumanized or talked down to – and all this campaign does is encourage and reinforce a negative behavior that most people probably don’t even realize they’re doing. Keep on keeping on 🙂

  14. Thank you for sharing so honestly how that campaign made you feel. I think in more ways then one our society is misinformed on how to treat anyone different from themselves.

    While intentions were obviously good, it comes off as disempowering. A person with a disability is not a victim but a survivor.

    No one wants to be treated like a child. I hope this post brings a mindfulness to a subject not discussed enough.

    You are a warrior. Rock on. We need your words.

  15. Felicitations! 🙂

    This is a brilliant piece. I’ve been physically disabled my whole life but only started to use a wheelchair three years ago. Since I did, I’ve noticed a huge difference in how people treat me. I’m no longer the person who studied astrophysics (not a joke), now I am spoken to in the tone that adults who have no experience with children use to a lost three-year old.

    I understand that people are nervous to talk to a disabled person, but we need to start teaching children (and adults) that it’s okay to talk to us normally. I think there is an element of worry about feeling awkward if the person can’t reply and there’s also the psychological element of seeing someone lower down as a child. We often talk over the heads of children, so people, perhaps sub-consciously, do the same to disabled people.

    I have recently returned from a pilgrimage to Lourdes, the famous town in the South of France. One of the group was a lovely woman, who was unable to move much. It was her birthday while we were out there and we sang “Happy Birthday” while we were in a cafe. A lady sitting at another table came up to our Birthday Girl and gave her a lovely rose (they’re sold to put at the statue of Mary in front of the Basilica). The lady was in tears, as were many of us, as it was a very kind gesture.

    I now don’t know how to feel about it. As a lot of very, very sick people go to Lourdes, and my friend is thin and looks in her teens, it is possible that the woman may have thought that my friend was dying and it was her last birthday. As there are people in wheelchairs everywhere in Lourdes, I don’t know if pity was the reason or not. My friend kept the rose and brought it home with her, so I don’t think she saw it as patronising. What do you, and others, think?

    • Hi Lorna, thank you so much for reading and for your kind words. I hate so much that you have been patronized and belittled for the simple fact that like me, your legs don’t work like everyone else’s do. I hate that we are seen by some as less & inferior just because of that – and that is what I’m working to change.
      I hope that these experiences haven’t damaged you, but that they have empowered you. I’m cheering you on. Keep going. 🙂

  16. Awesome Ms. Spunky keep on keeping on and I realize I need not tell you that cause you are going to any way. Loves it times three!

  17. The other problem I have with campaigns like this is that they often seem to give non-disabled people a sense of entitlement to my time, my disability, and my story. There are times when I’m thrilled to answer questions and have a conversation about disability. There are other times, though, when I’m tired, or busy, or just don’t feel like talking to strangers. I’ll still politely return a “hi” or thank someone for a compliment on my cane, but I’ve occasionally had people get mad because I then went back to what I was doing. Wanting to start up a conversation is a great goal – but only as long as you respect the other person’s desire to talk to you – or not.

  18. I’m gonna leave this here so you can know. This kind of post makes people like me want to not talk to you at all. And maybe that’s what you want. If that’s what you want then no problem. I have no problem not taking to you or other people if my ‘hello, how are you?’ Is just gonna piss you off. I’m shy and a bit awkward and you getting pissed that I said ‘hello’ to you makes me want to not talk at all to anyone. Posts like this tell me basically ‘don’t talk to anyone cause you’re going to offend or make them angry’ so I won’t talk to you and that’s fine with me. You’re a person, I know that, so am I. Will I hold the door open for you or whoever, sure. Will I talk to you? Hell no. Sorry just letting you know that while I understand your frustration and anger, this kind of post tells me not to talk at all.

    • Thank you so much for taking the time to read and share your thoughts. But I think that you’ve missed my point entirely. I don’t want people not to talk to me. I don’t want people not to be friendly to me. What kind of bitter person would I be if that’s how I felt?
      What I want is for people to speak to me like the competent and capable adult that I am. Not to speak to me like I am a child, or to speak around me because they think that I am not capable for speaking for myself without knowing a single thing about me other than that I walk funny.
      What I want is to be spoken to conversationally in a tone that is not belittling or patronizing like the campaign conveys.
      I want to be spoken to like any other human being with two perfectly working legs would be – and I don’t think that is to much to ask at all.

  19. i know exactly what u mean i too am different have aspergers and dyspraxia and people should just talk to us like anyone else i really understood and apreciated ur post Nastasja

  20. I think this is one of those moments where I am considering Autism a blessing.

    Because I was very used to people not talking to me, and rather oblivious to a lot of things going around me, before my inherited genetic disorder kicked in.

    When I was small, and Mom and I were out in public and a parent with a child my age or younger asked their parents “The Question,” some of those parents would come over, and politely ask if their child could ask her “The Question.” And because my mother calmly and smilingly explained about her brain not being able to tell her legs what to do, I didn’t feel the need to wonder. My literal brain understood why she had walked on her toes as a child and now used canes and a wheelchair. I didn’t need the proper noun. We had the telethon on one year and they told me that Grandpa, Mom’s dad, was one of “Jerry’s Kids.” I didn’t catch the MS name. Grandpa used canes and a wheelchair, but not for the same reason Mom did, and when I was somewhere between 6 and 8 and an older friend felt she needed to tell me that because both my grandpa and mom used canes and wheelchairs I would as well someday it was filed under “weird stuff people said” file. In the same one as “how can Grandpa be a kid, and this Jerry’s at that, when he’s a grandfather?”, not the ones that were in the upsetting ones. Not the one where I fell asleep in a sleeping bag next to that same friend with a small doll, and the next morning searched that bag and everywhere nearby and she watched me look. I figured it out. Sometime around the age of 13. Around that time I met a girl with cerebral palsy and I told her Mom was disabled, and the words she always used. First time it occurred to me there should be a name. Strangely a few years before that girl- the teen, not the thief, was getting a ride from Dad and she purposefully worked her CP in, and he told her that my mom had it too. A therapist a few years before had tried to tell my parents I was in a terrible state of denial because I wasn’t upset about the minor increases in ability that Mom had had didn’t upset me like his mother becoming ill soon before he met me upset him. They didn’t understand that I literally did not know the name of her misdiagnosis.

    I remember, at some point before I needed anything from the lingerie department, being with Mom at the mall and being asked what she needed. It was not one of those moments I could speak to adults much better than kids my age. Mom jumped in with her working brain (she had a Masters degree and was a speech pathologist at a rehab hospital).

    I don’t expect conversation. But not because of my physical disability, it was because I was the weird girl who couldn’t manage social chat. So my classmates left me alone.

    I do remember, one evening I was at a fairly sparse worship service where a disabled young woman was in the story that wove through the sermon, and my wheelchair was sitting beside my pew, that I shook hands during the Sharing of the Peace afterwards with people who walked farther than usual- though always a good number will see my canes, chair, or assistance dog and come over.

    Mom did not have Cerebral Palsy, or at least not only CP. Grandpa never knew the words “Hereditary Spastic Paraplegia.” Mom may have had mild CP at birth or childhood-onset HSP. Since I was 20 when I went from clumsy to using a cane and 22 when Mom and I were diagnosed I would normally be able to remember any difference to how I was approached. But I am learning how to approach normal people. I have actually improved a bit due to a physical therapist, at least for a while (I was weakened during an illness so I had atrophy, rather than progression). Due to work with a therapist and practice with a group of people from my church who people have already told “you do what you do for any other person,” however, it is actually easier for me to see someone in the grocery aisle, as I sit in my wheelchair with an increasingly heavy shopping basket on my lap, to say “Excuse me,” and to ask them for whatever is on the top shelves, easier for me to find the words to direct them to the product I want and to make eye contact as I say “thanks.”

    My life didn’t go normally. I don’t work, and help care for a severely disabled parent (can’t sit up or roll over by herself, though HSP only hit below the waist, and has dementia). Talking to me can be an effort. But luckily I’m with a group that tries the normal things and when I explain “I’m not looking at your face because I’m Autistic, not because I’m more interested in something over your shoulder” and keep trying.

  21. Hi Ashley,
    Just read your comments and I want thank you for your courage in speaking out for the need for all of us to be more aware of the person inside, regardless of the “disability ” we’re dealing with.
    My feelings are that no one really is without need for understanding.
    Personally, I seem to appear to others as completely able, so am often judged and ridiculed when I can’t perform as it seems I should be able to.
    Just getting a conversation going like this one opens eyes to the feelings we all have.
    Even small progress in enlightening others while we allow them to enlighten us to their feelings is progress.
    Your gracious responses and willingness to hear others without anger does you credit.
    May you continue to feel God’s help in your efforts, both in public and private.
    As a person of faith myself, when people just don’t get me, some of my favorite verses are Isaiah 41:10-13. He really listens.
    Hugs and much love to you, dear lady.
    ~Abigail Sharon

    • Abigail, thanks so much for your sweet, sweet response. It made me cry!
      This post had garnered so much more of a reaction than I ever thought it would. And while some responses have been obviously critical, I am just glad that this discussion is finally happening and people who may have never even let ableism cross their minds before are now seeing just how real it is.
      Thank you again for cheering me on. It means more than you can know.
      And you’re right, He really is always listening. And what a marvelous hope that it. 🙂

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