"Selfish nonsense."
A reader who didn't even have the courage to sign their name, wrote in response to my post yesterday that I had written 'selfish nonsense' about 'housing and disability'. I had several reactions to the slap.
First, anger - On a blog that's up front about being about disability issues, I wrote about having to make a significant lifestyle change because of the issues I face as a disabled person and the fear I have about being inadequate in a crisis along with the isolation I face because of the lack of access experienced in the country. Not easy stuff for a proud person like me ... then I get slapped because I wrote about this topic ... which apparently is piffle ... by someone who came here to read about what they wanted. (Who's really being selfish here?)
Second, anger - I'm guessing that whomever wrote the comment is probably non-disabled and has probably never had to think about disability and housing and therefore 'disability and housing' seems an unimportant topic. I get tired to those without disabilities telling those with disabilties that we do not have the capacity to determine our own agenda. I just pray that this person does not work with people with disabilities directly, I can imagine, "Your tears about teasing are self centered, now I want to talk about employment." The worst of the worst disphobic attitude is that you know best what I should do.
Third, anger - the implication that I don't care about the Latimer situation is outrageous. While I have no need to justify myself to anyone ... I have written about the Latimer case in newspapers across this country. I have responded to every interview request by every news source no matter how small. I have posted about the issue here on this blog. I produced a two hour CBC radio documentary, award winning, called: Life, Death and Disability ... that directly addressed the attitudes that lead to the murder of people with disabilities. The airing of this so upset the Latimer side that you'll see them curse me out on various Latimer support websites. The enemy knows my name.
Fourth, anger - do people think that I just sit down at the typewriter and words automatically flow from my hands. That I can 'will' a piece to appear? That this is all so easy for me? Firstly, I have written so much about Latimer and the 'case' that it's difficult to find a new toe hold. Secondly, when writing about another individual - even if you hate what they've done - you need to be more careful when stating facts. You need to check. My anonymous abuser just gets to be hopping mad ... I'm supposed to do something that gives food for that anger. Well, given my history with this case and the things I've already written, might you think, "I'm sure Dave is working on something and will write when he is done." In fact, I now have a toe hold but I need to be sure of one piece of obscure information. I'm tracking that down. Because, while on the blog I rant, I try to rant without libel, I try to rant with information. So, I will write what I want to write when I have the information that allows me to say what I need to say.
Fifth, anger - I have never in my life left an anonymous comment. Ever. Most people on the blog sign something, intials, real name, net name ... something and I appreicate that. But if I write something nasty, it has my name. I think it's only respectful to the writer to know who says what. The courage of an opinion is easy when you leave it like an abandoned child at the doorstep of another.
OK, that done, for those of you who are also waiting for a Latimer response, I hope to have the information I need next week. There are only a couple people who might have what I want, then I will write, of course, about Latimer.
Thing is now I'm feeling shy about making myself vulnerable while being honest about my reactions to my life and my growing disability. I found so many of the comments yesterday helpful both in practical ways (about the practicalities of selling the house and other things to consider) but also in emotional ways (That thing about the greatest disability is fear - really hit home with me). But when I started my blog, I was fearful, my worst fears would be that people would interpret my writing about my journey as a newly disabled person as 'drivel' and 'self involved' ... and now my worst fear has happened. I'm not quite sure what to do with that.
Selfish nonsense, indeed.
28 comments:
Oh, dear Dave, as someone who comes here every day, it's not YOUR words that are 'drivel' and 'self-involved'.
Your words are vulnerable and honest. They are thought- provoking and challenging. Sometimes, like yesterday, they are incredibly powerful in their weakness. Collectively, they give a window, to us two-footers, into the world of disability.
I have a father whom I love very much. Tomorrow is his 84th birthday. His eyes are bright blue and they still dance with life. His mind is as sharp as a tack. He has been disabled for all of my life and in the last few years has gone from canes, to scooter to wheelchair. His lifestyle has had to change dramatically in this last year he has become suddenly far less independent and more in need of the help of others in order to manage. Thank God he still enjoys life, scooters over to the nearby casino when he is able, and looks forward to hearing from me and my siblings and his friends.
I have been grateful for the insight and understanding I have gained through your words. Insight and understanding that helps me to love my dad more. To understand my role in his life and how to express the love I have for him most respectfully. Dad doesn't have that gift of expressing the issues that face him like you have. In my life, you have spoken for him. And it's not just him. There are others with disabilities that I care about. I am grateful! Your willingness to risk the reactions of a few (like Mr/s Anonymous) have absolutely benefited the many. And I'm just one reader. How many hundreds and thousands do you have? I wonder if you have any idea of the kind of impact this blog has had...
Keep writing Dave. Keep writing for me. Keep writing for my dad. Keep writing for those who have no voice.
And don't let the anons of this world get you down.
Dave, as you know I often have different opinions to you, but I hope I've never hurt you in expressing them as I'd be so upset if that was done to me on my blog.
Frankly the 1st anon poster is a troll. Take no notice! The thing about a blog is that it is your space to write about what you wish, including reams of 'self indulgent drivel' if you so chose. That for me is the joy of blogging. If we write stuff like that it may or may not get read, but we get it out there, after all it's not a book, newspaper, film etc that someone has paid to view, a blog is your own personal space to use as you choose. I think you should choose to ignore such anonymous viciousness however difficult that may feel at first. Think how pathetic and lacking their lives must be to attack complete strangers behind the veil of anonymity on the internet!
Hugs. Bendy Girl x
The feminist movement used to say 'the personal is political'. When reading your posts that reflect on your own personal experiences, I am usually struck by the political implications. The last post, imo, was not 'selfish drivel' but raised really important questions about the consequences of being in a wheelchair and highlighted sensitively some of the dilemmas wheelchair users face. This issue may be personal to you, but it raise bigger questions about the experience of being disabled, and thus is political.
Having said this, I also agree that it's your blog and you can post as much selfish drivel as you please... I just don't tend to find that you do this.
So when I read yesterday, and even had a look at the comments. I didn't bother to leave one. But I felt (and I haven't gone back to check) that many would leave you their opinion - and having read the one negative comment - well I felt, there's at least one in every crowd. And to form your opinion of how your blog is impacting others...on one comment (or on the lesser of the total comments) doesn't make sense. But you know that.
Keep writing - I count on it to keep me focused...admitting I don't always 'get it' and appreciate the insight.
Dave,
Sometimes, "wisdom comes with age" and one of the lessons I've learned in the past few years is that often, I am a better writer, a better speaker, and have much better perspective on a subject if I give myself time to think.
You have every right to take as much time as you want to think about your commentaries regarding Robert Latimer before posting them - you have every right to not post a damn thing about it if you want.
I think one of the things that keep people coming back to your blog is the humanity you offer to your readers...you allow vulnerability and doubt as you ponder your world.
If it were to become a blog that was simply political, or just a daily lecture on disabilities, we would all miss YOU dearly.
For good or bad, your words have allowed us to come to know Joe and you, and to feel as if we are connected to you, not just because you have a disability, not just because you do work for people who are disabled, but because you are a genuine person, who has a wonderful perspective on this life we are all leading.
I, for one, wouldn't have it any other way.
Perhaps "anonymous" should have pointed us to his/her blog, so that we could read his/her profound words yesterday...
Dave,
I come here to read your blog because I like reading about you! What you are thinking, what you are doing, your opinion on disabilities and the people who have them. I saw you at a TASH conference many, many years ago at the beginning of my career and your message so resonated in me that I have always remembered it and you.
I was so happy to hear that you had a blog and have enjoyed reading it every morning.
There are so many of us who enjoy knowing more about you, please don't let one person make you feel insecure.
Lisa
What you told about housing and disability was extremely interesting to me!!
Indeed, living in the country -however romantic and beautiful it may be - could become like living in prison, if you lose a big part of your independence because of distance or isolation. It's the same with people who live in the country but when getting old realise they prefer to live in town, near the shops and restaurants, the banks and the post-office. I can imagine you'd enjoy the comfort of even a small town, where you could go shopping or go and have a drink without even needing the car.
Mieke.
What you told about housing and disability was extremely interesting to me!!
Indeed, living in the country -however romantic and beautiful it may be - could become like living in prison, if you lose a big part of your independence because of distance or isolation. It's the same with people who live in the country but when getting old realise they prefer to live in town, near the shops and restaurants, the banks and the post-office. I can imagine you'd enjoy the comfort of even a small town, where you could go shopping or go and have a drink without even needing the car.
Mieke.
I haven't commented here before, but I read your blog almost every day.
The annonymous commenter that called your writing about housing and disability "selfish nonsense" reminded me of my early experiences as an activist in the environmental movement in the 1980s and 90s. It was very clear that we were expected to sacrifice all our personal needs/wants for the cause without ever calling the larger movement's agenda into question, and unless they could be exploited for publicity purposes, our personal stories/experiences weren't supposed to be mentioned at all. The leadership seemed to think that a mass bodies all marching toward the same goal, shouting the same slogans (or thowing the same monkeywrenches) was the only tool that would enact radical change, but they were wrong.
Politics and activism are important, but what draws me in (and gets me thinking about/involved in the issues you bring up) is the ways that you are willing and able to personalise what you choose to write about.
For me, your blog embodies something I have learned only after years of work as an activist (environmentalism, GLBT issues, disability rights) and a performer/writer: We can protest and picket and fuss and fight all we want (and we must), but the thing that will really change hearts and minds and bring on actual lasting positive changes in society is personalizing the issue(s) for as many people as possible (and then we can spur them to action). Sometimes we do that by creating art/stories (written or performed or pictoral, fiction or memoir) that bear witness to our experiences as marginalized people and thus give other an opportunity to access specific details of a world/life they would otherwise be priveledged enough to never have to aknowledge or understand. Sometimes we do that by simply being ourselves in the world, with no appologies.
Your blog does both for me. And personally, as I am in the midst of figuring out my own issues around housing and relationship and independence/interdependence, it was immensly helpful to read someone else's thoughts about being unable to seperate issues of housing and disability and safety. Because the other thing that sharing our stories in a public way does is remind the people who identify with them immediately that they/we are not alone, we are not the only ones dealing with x or z, and our voices are important, our experiences matter.
Thank you. Thank you for writing this blog exactly the way you do.
I have never left an anonymous comment either. This is your blog, a place to voice your thoughts. Our society tells us that putting our own needs first is selfish. It isn't. Women and disabled people and others who are in the minority often come second and their needs don't get met first. Once again you are setting a great example for others.
Please keep writing here.
Just ignore it. What I've found is that sometimes personal issues/decisions require immediate attention, while political issues can sometimes wait a bit. We are bloggers, not the news media, and time constraints, disability, and other life concerns mean that we can't devote energies right away to broader disability issues, as important as they are. We can't be everything to everyone but have to be selective--you're making a difference every day with your job, more than most of us.
I usually post here anonymously for personal reasons but I appreciate your honesty and integrity Dave. I enjoy reading your blog, both from what you say as an activist but also from the deep things that come from your experiences. I am often left humble and appreciative of those things you share.
I am sorry that the individual making that comment did not share in the privelige you afford us to enter into your world. Whether you chose to post about Robert Latimer or Brent Martin's murderers being sentanced or even just finding compassion amidst your daily doings I thank you for your "selfish nonesense."
I'm glad you also have a photo up now of yourself and Joe.
Thank you Dave for all that you do and all that you are.
Dear Dave, I cringe to have to post under this title, but not having a site myself or able to use the other identifying dot clarification, I have little choice. I too,think it only polite to, at the very least, initial identification at the end of a comment.Everything that you wrote today, I felt yesterday in response, and in my anger,wrote as such. It was(before I deleted it) a very long and heartfelt response to what I felt to be a slap in the face.I thought long and hard,then came to the conclusion that perhaps such a negative comment did not even deserve a response, and if you felt otherwise you'd "let them have it". I'm glad you did.As myrrien said it is an absolute privelege to be allowed to enter into your world,and to abuse such a privelege (under the guise of free speech) is outrageous.People have written such beautiful comments to you that I can only add to their heartfelt sentiments.You are very much appreciated.Your blog must contine in its present form, with your agenda, and slant on humanity, which I guess from past postings, encompasses all forms of it! From p.t.
Dave
this is hard.
Have you ever had one of those days where nothing was going right and then you top it all off by really fucking it up and hurting someone you care about. That was me yesterday. I am annon comment #2's owner and I am not proud of that.
I have thought, since posting that comment, about how big I messed up and I wish I had never said it, I really wished I could have deleted it as soon as I had hit publish.
I am so very sorry.
My anger isn't your fault and it was unfair for me to take my frustration out on you or anyone else here.
Now I have perpetuated the cyle of anger by making you an dmany other good people angry at me. I am sorry to all I have hurt, truly sorry.
I am disabled and that is why this whole Latimer case (and all the other "mercy" murders!) scare me so.
I am in a wheelchair.
I am on a ventilator.
I can't feed/dress/bathe/etc myself
but I am still here and I want to be here!
I don't want someone else to have the right to say I should die if I get worse or lose my marbles.
I really don't want to be on "disabled death row"
I love life and want to live it the best way I can.
I am so sorry I was so angry and took it out on you and everyone else.
I'm sorry.
Pat
if anyone wants to berate me personally you can email me at pat.faulk@hotmail.com
I am not a coward and I am not an evil person and I just want people to know that.
I am so sorry, I can't say it enough! I screwed up and I hope you and everyone else can forgive me.
Of course you're not a coward, Pat. It takes real courage to say, "I'm sorry." My hat's off to you.
Regarding anonymous emails. I am coming into this late as I have just read all the responses to "Selfish Nonsense" including an apology from Anonymous Pat. I put my first response to your blog "advertising question" just a couple of days ago. Like Pat I have no Blogger Identity nor anything else that can or will identify me. Was I lacking in courage, probably. It wasn't a particularly political response but I am a fan of yours and at over 45 years of age I felt silly writing, so anonymous didn't hurt me. But in an effort to walk into the daylight. How about I sign within the content, Kathy, met and impressed in 100 Mile.
Dear Anonymous,
How in the world can someone with a disability be deemed "selfish" for analyzing how the disability affects or will affect their life? A disability (and a blog) are very personal things.
This is Dave's blog, don't presume to dictate what he should/should not write.
People with disabilities rely on others for so many things, they often have no choice. Are they selfish because of the reliance or because they MUST think how the disability affects their life? A disability does have a "self-ish" aspect as it affects one's "self" (sometimes others) and is a part of who someone is...it's often the one thing that drives many of their decisions in life.
Hmmm, would you also deem my son with a diagnosis of down syndrome as selfish? You know, all those times that he MUST be nebulized or his airways will close? ...I could have watched desparate housewives instead. Or perhaps, you would consider him selfish since his disability requires me to dispense his thyroid medication every morning? ...that's five more minutes that I could be puttin' on my lipstick. What about when he has to endure all those pokes and prods by the ENT, GI, ENDO, cardiologist, geneticist, OT, PT, ST and other intervention therapies all with the aim of him being more "able" to function in society? ....crud, I missed my manicure appointment again...
Dave and all, I do apologize for all the sarcasm, I suppose I am feeling a bit saucy and just plain fed up today.
Pat, since you addressed your apology partly to the readers, I'll take the liberty of forgiving you, for my part, for the impulsive comment you made yesterday. I did the exact same thing not too long ago on another blog, so I am humbly aware that there but for the grace of God go every one of us.
One of these days I'll have a party in my glass house, and you're welcome to drop by....no throwing stones allowed, but there IS a ramp...
Thank you Dave for the work you do on the blog. You take the path less travelled and I respect that.
On my part Pat, apology accepted.Thank you for your courage in owning up, and I would never take that extra step to berate personally a contrite person. I thank you instead for being brave. A heartfelt apology is a wonderful thing.from p.t.
Pat,
I am incredibly amazed that you came forward, when you didn't have to, and apologized when no one would have known. That takes real courage. Thank you for explaining what happened and the nature of your fears. Latimer killed his daughter, let's not let him have the death of our respect for each other on his hands either. In emotional times, emotional mistakes get made, on all parts. I apologize to you for my assumption that the poster did not have a disability - the whole world doesn't walk. I do promise you that I've got a Latimer post coming. I'm hopeful that on Monday or Tuesday I'll have that bit of information that will allow me to write what I think could be a good way to undermine his 'mission' of changing laws so that it's easier to kill us. But back to the basics, you asked for forgiveness - it is freely and gladly given.
Pat: I, too, find it impressive that you had the courage to come forward and apologize with your name (and even your personal email) attached. I don't think you deserve any further beration--it sounds like you've been berating yourself more than enough. We all say things or do things at times that we don't mean, perhaps especially when we are afraid -- as you were (are), in relation to how Latimer's case could have an impact on the lives of people with disabilities, including you.
I'm sorry that cases such as Latimer's have hurt you so much, Pat. What you write here reminds me of the man with Down's Dave recently wrote of--who rightly felt that the direction of discussions about genetic modifications devalued his life. Too often (most of the time?) discussions of euthanasia leave out issues of personal rights of people with disablities completely and make it sound like we should die; after all, that's what most abled people say they would want in such a circumstance. It's truly Nazish and scary.
Dave, your words are insightful, honest and powerful.
By writing openly we do open ourselves to that attack of the cowardly anonymous comment. I hope you will continue to share your journey. Even though my daughter is young we face the same challenge in how to balance our lives with the reality of her disability. It is heartening for me, so new to the practicalities of disabilities, to see you work through similar issues.
I should learn to read comments first!
Pat, as others have said, it is very brave of you to apologize.
Thanks everyone so very much for your forgiveness!
Thank you
Thank you
Thank you
Pat
Pat, I am posting this rather late, I don't know if you'll see it.
It takes great courage to own up.
I think we all do/say something terribly stupid (at least once) in our lives. I know I still agonize over a stupid sentence I said to someone I couldn't stand 40 years ago....
Welcome to Humanity!
Pat,
thank you so much for your apology, it really did take great courage to post. (I am just getting to my weekend reading today) I also apologize for "judging" your commment harshly when I first read it.
It's easy to feel passionate about disability issues/advocacy and at the same time it's also easy for that passion to turn into frustration and fear.
Thank goodness we have Dave and his insightful blog to read and share our thoughts!
Thanks,
mamie
Dear Pat, Have been thinking about your apology & have been very moved by your courage to reveal yourself. I have great respect for you.
It's also a reminder to me re assumptions I make & reminded me of an old poster that I use to have that said,
"If you really want to understand me, hear what I'm not saying, what I may never be able to say" I was guilty of not hearing very deeply.
One of the themes/lessons I've learned from Dave over the years is being human is complex. We all do/say things we regret; it's what we do afterwards that is key to relationships. Take care Pat.
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