More like it

L. writes, “Since you requested some rudeness and drama…” Hold on. That was not my point. I simply suggested we take the gloves off, cease our bent for correctness and tell our truths. Isn’t that what a blog is all about? I believe we are moving in that direction. Elizabeth writes, “I think that this is exactly the place to dump some frustrations with like minded people so that we aren’t always venting to those we care about. I like you all but you can read my post and shut down your computer.”
We are not monolithic. Not all of the serious sick are like-minded, moving in our chairs and on our walkers in a herd mentality. Have you ever seen a cow using a walking aid device? I think we respect each other to a fault, and we take great pains to avoid dancing on toes. That is not bad but can get in the way of important business. Openness is nurtured by unfettered reactions.
We should feel free to agree, reinforced by our willingness to disagree.

34 Responses to More like it

  1. Hannah December 7, 2014 at 10:40 am #

    Correct me if I’m wrong, but I think you were asking for a good old-fashioned debate. Or an 18th century duel? But…I do not think you were asking anyone to be an “Internet Troll” here on your blog. Or were you? If you don’t know the term, look it up on The Google.

    As a side note, according to Wikipedia, the original definition of the word “troll” from Scandinavian legend is: an “antisocial, quarrelsome and slow-witted creature which makes life difficult for travelers.”

    Hmm. Sounds like me after a long day. It also sounds like a chronic illness – the constant, trollish companion you just can’t shake. RMC, if you like that analogy, you can use it for your book. But I will claim royalties.

    “I think we respect each other to a fault, and we take great pains to avoid dancing on toes. That is not bad but can get in the way of important business.”

    What specific important business would you like to conduct here? Or am I supposed to answer that as a reader? Answering questions with questions…classic maneuver. I don’t like that game. Someone get me a coffee.

    • Richard M. Cohen December 7, 2014 at 8:12 pm #

      Hell. I don’t know. I am not looking for trolls. Just honest discourse, absent hypersensitivity. Blunt talkj, not a gratuitous slugfest. If you do not think our issues are important business, what are you doing here?


      • Hannah December 7, 2014 at 9:43 pm #

        “If you do not think our issues are important business, what are you doing here?”

        Hey, wait. I certainly did not mean that the business here is of little importance. Are you crazy?! Of course it is important…at least to me, since I can only speak for myself. And that’s an honest answer without a rainbow.

        I meant to ask whether there were specific topics you felt people weren’t responding to with the blunt honesty you were looking for. But it seems you are looking for all honesty, all the time. I like it.

        I’m just here to learn. Thank you for nurturing the platform.

  2. Yvonne December 7, 2014 at 5:09 pm #

    No one needs to be trollish but I agree many have been dancing on rainbows. At least I know I am guilty. Everyone has so much to deal with and we all have different approaches I have not challenged here as much as I do elsewhere. Richard has admitted to being an asshole at time cloaked as stubbornness. Me too cloaked as resilience but actually I was being an asshole and I got an MS pass. I knew it then and I admit it now. @L good ripping band aids off. @Richard thanks for reminding us to keep it real on this blog. It’s ok to disagree with the disabled no more”woo,woo,woo”. I hate butterflies and fluffy bunnies and it’s ok… my destiny is not tied to either of those things.

    • Richard M. Cohen December 7, 2014 at 8:15 pm #

      Screw the Easter bunny.


  3. MB December 7, 2014 at 5:47 pm #

    So then here’s a question. What have you done to improve your situation or that of others who are disabled? Have you reported ADA violations and followed up on them? Have you stopped people from treating you in a condescending manner by letting them know you would appreciate compassion but not pity?

    We are good at pointing out injustices but that really means diddly-squat unless we’re willing to offer a solution to the situation.

    Are you willing to do something, or are you content to just complain about what needs to be done?

    • Yvonne December 7, 2014 at 6:41 pm #

      I personally have never experienced an ADA violation. Condescending is not something I have experienced either. Probably more overly compensating is my experience and a simple”thanks but no thanks” usually solves that problem. Is there a handicapped flag that needs to be thrown because I feel uncomfortable in a situation? Probably not because most of the time it’s me in my own head creating perception rather than intent. Again, this blog allows us to talk about those scenarios, real or imagined, that only others who share these maladies may understand. Just cause we bitch here doesn’t mean we don’t call it out if needed.

    • Richard M. Cohen December 7, 2014 at 8:18 pm #

      Good questions. I call peop le on attitude, but U am not the disability police.


      • MB December 7, 2014 at 10:29 pm #

        If not you, than who?

      • MB December 7, 2014 at 10:30 pm #


    • L December 7, 2014 at 9:50 pm #

      If I was a facebooker, I’d “like” this.

      I wasn’t trying to be trollish with my comments. I meant what I said though.

      I am here to see how the stem cell trial goes and I like to learn what I can from fellow pwms so I read the posts and comments that aren’t related as well. I’d like to think we can all learn from each other.

  4. MB December 7, 2014 at 8:06 pm #

    R.I.P. Stella Young (24 February 1982 – 6 December 2014)

    She thought the saying, “The only disability in life is a bad attitude,” was BULLSHIT, too.

    Please watch if you have a minute. She is singing our song…

    • Richard M. Cohen December 7, 2014 at 8:27 pm #

      Powerful and right on target.


    • Yvonne December 8, 2014 at 8:47 am #

      @MB thanks for sharing this video. It was so appropriate for this discussion. She hit all the points many of us were making here. Her spirit lives on as she flies free.

    • Betty December 9, 2014 at 1:07 pm #

      Thank you for sharing that MB. I hadn’t seen it, and it sure hit home for me.

  5. Jeff December 8, 2014 at 1:49 pm #

    The video nailed it – thanks MB.

  6. Christopher December 8, 2014 at 3:16 pm #

    Wow… great conversation. I don’t know if anyone really cares what I have to say, and that’s okay. That being said, I agree with the woman in the video about the problems with perception but I disagree with some of her points. Her speech was well presented, but it didn’t leave any room for the listener to really question anything. More like a sermon. I believe she is right about messed up perceptions about disability, but struggling with disability can be inspirational to people depending on the circumstances/context.

    Some people who tell me that I am inspirational, I will casually say, “thank you but I’m just doing what I need to… I’m not trying to prove anything.” Other people I just give a simple, “thank you” and go about my business. But it also makes me think that I am missing opportunities to change minds… to attempt to make the world more like what I believe it has the capability to be. And then it’s gone. I should have said, “thank you, but you may be missing the point. Life is difficult for everyone, but I choose to remain engaged and try not to leave it to others to pick up the slack–I’m not entitled to anything. If you are truly inspired then live that way, and become part of the answer towhy should I even try.”

    I also don’t agree with her statement that disability isn’t a “bad thing.” I might be missing something, but many disabilities (if not all of them) are a really bad thing to befall anyone. Especially anyone who has not had a disability since birth, which is actually much more arduous to accept and deal with. Does it change someone’s intrinsic nature? Maybe not. Does it make any person less deserving or less of a person? Decidedly not. But it does negatively impact his or her life and those around them. Finding solutions or ways of coping and thriving with that negative impact can be definitely inspirational. The people who just say that I am, or you are, inspirational because of their inability to deal with awkward feelings or just complacency, ignorance or haughtiness… are exactly the people to be taking the opportunity to inform how to carry a message of mindfulness and pay forward that supposed inspiration. I do a lousy job, but I keep trying.

    • Richard M. Cohen December 9, 2014 at 7:59 am #

      I just do not have the energy or inclination to engage. I only say I am just living my life. Nothing I can say is going to change a person.


      • Hannah December 9, 2014 at 12:53 pm #

        “Though I do not believe that a plant will spring up where no seed has
        been, I have great faith in a seed. Convince me that you have a seed
        there, and I am prepared to expect wonders.”

        – Henry David Thoreau, from “Faith in a Seed”

        It’s one of my favorite books.

  7. Christopher December 9, 2014 at 11:30 am #

    You’re probably right, Richard. But wouldn’t it be cool to plant all those seeds that could be carried all over and eventually picked up by others who might have more influence? I don’t know… I just throw everything I can think of at the walls in life and hope eventually something sticks.

    • Richard M. Cohen December 9, 2014 at 8:30 pm #

      Yes. But…

  8. MB December 9, 2014 at 12:03 pm #

    Christopher, I think what Stella Young meant by disability not being a “bad thing” was intended more for the nondisabled than the disabled.

    People tend to avoid “bad things” like potholes, dark alleys at night, women choosing New Delhi as a vacation destination, etc. To lump disability into the “bad things” category puts disabled people into the class of things to avoid.

    Don’t get me wrong though. As we know, having a disability is not a walk in the park for the disabled. I know I hate every minute of it, but that’s because it makes everyday tasks so hard. We can tell people that, they give us puppy dog eyes and say, “Yeah,” and then cartwheel away relieved they aren’t one of us.

    I agree with Richard about not having the energy or inclination to engage and I assume educate individuals about their attitudes regarding disability. To me at least, it’s tiresome and ineffective.

    Disability education really needs to begin with the young. When schools started educating students on the dangers of cigarette smoking, there was a measurable decrease in the number of youth who took up the habit. Now that’s powerful.

    • Richard M. Cohen December 9, 2014 at 8:34 pm #

      You are right, C. Don’t hold ypur breath.


    • Geof December 10, 2014 at 10:08 am #

      I know we have gone to our kids’ schools to talk about the medical challenges our kids face. It does wonders for reducing the numbers of comments made from a position of ignorance. It causes some kids to wonder about g-tubes they had never noticed, and maybe they comment on them, but it is no longer “Her belly is so funny looking.”

      It is harder to mock in a mean way that with which we are familiar. Aquainting children with what it means to live with medical conditions is one of the best parts of the often difficult decision to integrate classrooms to the extent students are able to learn.

      At work, I don’t hide my MS, though there are times I question the decision. For the most part, I hope my work and leadership speaks for itself. I hope my employees take inspiration not from my MS or my family’s medical situations, but rather from a determination to find ways around tough spots with determination and humor.

      • Richard M. Cohen December 10, 2014 at 7:39 pm #

        Wer sll share that hope, but…


      • Richard M. Cohen December 10, 2014 at 7:40 pm #

        All of us share that hope, but…


  9. Yvonne December 9, 2014 at 1:03 pm #

    @mb-the New Delhi reference was hysterical 🙂

  10. Jeff December 9, 2014 at 5:23 pm #

    MB – your post somehow triggered my memory to a blog entry from the Wheelchair Kamikaze. He relates being disabled to waking up on an alien planet where nothing is built for your use. Thought some may enjoy –

    • Christopher December 10, 2014 at 2:10 am #


  11. Linda Lazarus December 9, 2014 at 8:32 pm #

    Your post made me think about this video I just viewed. Beauty.

  12. nancy s December 10, 2014 at 11:27 am #

    I’m a bit late ….but…did you know that trolls have troll-splinters in their eyes and that

    makes them see everything askew? Is this what is wrong with so many?

    And I admit that I do not know what constitutes an ADA violation. And are places of

    business grandfathered from the law? There are so many stores that are impossible

    to do because of their heavy non-automatic doors.

    • MB December 10, 2014 at 11:53 pm #

      There is no “grandfather clause” exempting older facilities. They are obligated to make modifications that are “readily achievable”—or that can be made without great expense or effort.

      As for impossible— nothing is impossible. The ADA guidelines for doors is that not more than 5 pounds of force should be used to open them. The building owners should be able to install some type of pneumatic assist for this purpose.

      Look at grocery stores. Doors automatically open for people who are pushing carts full of money–I mean food—don’t they? I wonder how able bodied people would react to a power outage where they would have to figure out how to open doors while pushing a wheeled cart. Would they back out? Ram the door? Sound familiar my disabled friends with wheels?

      People fought hard to enact the ADA. It almost becomes a civic responsibility to report establishments that don’t comply.

      (I guess I feel pretty strongly about this.)

      • nancy s December 11, 2014 at 11:33 am #

        Thank you MB. I’ll do some research but will I have enough energy to fight this fight? I guess places will use not “readily achieveable” because of cost. If someone doesn’t help, I can’t manage the heavy doors at Barnes and Noble.

  13. Hannah December 12, 2014 at 8:19 am #

    I just had a thought…

    Just because you have hope, want to have hope, or are afraid to have hope…that doesn’t make you naive. Does that make any sense?

    “I only say I am just living my life. Nothing I can say is going to change a person.”


    I think everyone tries to live their lives the best they can. You aren’t alone in that respect.

    No, you cannot change a person. They have to want to change – they make that decision for themselves. But you can plant seeds. They may germinate many years after you planted them. You might never see them grow, but that doesn’t mean they don’t matter.

    Faith in a seed, baby. Have faith in a seed.

    Peace —