Sunday, October 16, 2011

A Blog About A Blog

I try not to spend much time blogging about blogging. But sometimes I have too. I am blessed with many wonderful readers, regular comment makers, and dedicated followers. It's one of the reasons why I still blog every day. I always try to make time to write, which means that I always try to stay alert to my world so that I'll have something to say. Joe will often be with me when something happens and joke 'well tomorrow's blog is written'. It's now a part of our lives.

But only a part.

Some readers become a little angry or upset when, though other means, they hear of something that has gone on in my life that I haven't written about on the blog. They accuse me of inauthenticity. I find this accusation odd. I do realize that I have a kind of 'social contract' with my readers. But I have never thought that that contact extended into areas of my life which I would like to be kept private.

Once when giving a lecture I mentioned how odd I find it that total strangers will ask me for my 'diagnosis' or
for a 'health status report'. Like since my disability is up for public view, my medical records should be available, hanging on a clipboard on the back of my wheelchair. Um. No. Um. Private. There are things that you may wish to know but that wish does not compel me to divulge. That's not the way it works. So, after I gave that lecture, two guys came up to me and said, 'So why are you in the wheelchair anyways, what have the doctors said.' I was polite because my only other option at that moment was extreme vulgarity wrapped up in rudeness. I chose not to go down that path. Not so much for them, but it take me longer and longer to repair myself after one of those bouts.

So, yes, I hinted at it yesterday. Something is going on in my life that is causing immense sadness, anxiety and despair. I don't choose to write about it for two reasons, first and foremost, I don't want to, second and even more importantly, it involves others and I have no wish to share private information about others here. So I don't.

I have long believed that people with disabilities lives are too public, much too public. That information is to easily and freely shared between people between service providers, at meetings, over coffee. We come to believe we need information about someone to serve them when in fact much of the information we have only serves to feed our curiosity and never enters our head when providing care. We need to learn to practice the same boundaries we say that they don't have.

So, to those who've asked, over email or in person, thanks for your concern, but this is something I'm holding in my heart. There's little room in there for a crowd.

22 comments:

theknapper said...

Take care Dave, your blog isn't a reality show......I appreciate what you share with us and I absolutely respect your privacy. It is also a good reminder to us in our work and lives re what we need to know and what is just"interesting".

Kristine said...

Oh, Dave, I'm sorry that something's hurting you right now. I'll just feel a little sad with you for a moment, without needing to know the reason, because I know that you have a strong support system of people and a loving God to take care of you when you need it. I'm glad you don't feel obligated to share more than you're comfortable with, and I appreciate you reminding all of us about the value of privacy. I hope your inquirers are full of more sincere love and concern than idle curiosity. Dios te bendiga!

Ellen said...

I am praying for you. Thanks for sharing what you do on this blog. I wish you peace.

Abi said...

Hi Dave, I don't think I've ever commented on your blog before but I've read it for quite a while and have learned many things from you.

I totally agree that you have no obligation to tell your readers anything and that we have no right to ask. Your life is your own and what you choose to share with the world is entirely up to you. So all I will say is that I hope your pain eases soon. Take comfort in your loved ones and take care of yourself.

Anonymous said...

Please know that I feel privileged to be able to access and read what you CHOOSE to share with us. I always take away something positive from your blog, which I can apply to my own life. Sometimes, it's to be honest with myself about something or it's a comment I know will encourage a friend, etc.

I'm glad you do use boundaries, and pointing this out to us (your readers), also re-inforces that we need to use them for ourselves (and for others for whom we may advocate).

I think it is healthy and appropriate for us to have our own "intimate circle", as well as even an "intimate inner circle"; which we determine ourselves who will have entrance.

If I didn't think you had any intimate relationships (and, like the sex education course ... lol ... I'm not referring to sexual intimacy ... I'm referring to emotional intimacy) I would be concerned if I knew you were upset and alone; BUT, I know you have ONE wonderful loving person whose part of those circles, and you likely have several others too).

I appreciate you bringing this subject up, as I have felt so "exposed" by the system over the years, that I honestly feel raped by the system ... and I don't use that word lightly. I have felt so exposed, that in my advocating, I've been extremely open in identifying systemic situations; but, like you ... I am going to step back a little, and think ... and consider how "much" I want to expose ... as it certainly gets cold walking around with nothing on all of the time (lol).

Thank you for modeling, and teaching us about boundaries, by implementing them yourself ... and for advocating for yourself (and putting us in our place - in a nice way), as relationships are a learned skill we're all working on. I know Andrew is asked, even by total strangers about what is wrong with him, etc. ... so, I'm going to get him to read your blog, so he can see that even "you" sometimes have to remind people that you have the right to your own privacy.

THANK YOU for modeling what you were just teaching my son about his "Rights"!!!!!

~ Elizabeth & Andrew

Leslie said...

I'm sorry you're going through this and certainly don't think you are under obligation to make what you prefer to keep private public. I'm grateful for what you write and read your blog daily although I rarely comment. Thinking good thoughts and hoping for the best for you!

Kristin said...

I appreciate and respect your need and right for privacy. Just know that we are here for you if you need us.

Happy said...

As you've said before, keep a walled off garden for yourself and your own needs. Share what you wish to share, and remember you don't owe us blogs. They're a gift that you share with us.

I guess one of the fortunate (lol) things about being housebound with my disability is that I rarely have to encounter that type of intrusiveness. My care-givers inquire because it's their job to know, and I rarely encounter strangers.

As for "Why are you in a wheelchair?" I suggest making up outlandish stories. "I was breaking into a Bond villain's lair on behalf of Her Majesty, when the laser defences went off. I was lucky to survive."

Tamara said...

I like and respect the fact that you have boundaries. I realize you share many things that happen in your life and that using a wheelchair and working with people with disabilities certainly is part of who you are and, as such, shapes your perspective and what you write about here. But, I don't see this as a personal diary or journal. You don't "owe" us anything - not a daily blog or every detail of your life.

I experienced something this past week at a cooking class for people with Down syndrome - totally fun evening - that made me uncomfortable - and I think it was because, as you said, people with disabilities' lives are often too public.

One young woman (19) brought her sister, who was probably in her mid-20s, along. It struck me how the older sister talked about her younger sister with DS right in front of her. She hadn't met anyone in the group before, so she was really talking to strangers.

One thing was that her sister missesd her school bus frequently and that the older sister wasn't going to take the younger to a new movie if she missed it 5 times before it came out. And there was something else that she wasn't going to let her get by with because her parents never let the older siblings get by with that same thing. The parents apparently have some health issues now, so this sister is very involved in her younger sister's life. I don't think she realizes how she might be making her sister feel. I was very uncomfortable. She also talked for her a lot, but the young woman was perfectly capable of talking for herself.

I really have to make sure I don't do that. I know better. I just have to make sure I practice what I preach ... I don't want my son to feel, as Anonymous said, "...cold walking around with nothing on..."

Anonymous said...

I know the feeling of people oversharing my medical history.

Like Asperger's is a novel conversation piece, and not a set of stereotypes and a parent sympathy gambit...

Max Neill said...

Dave, a common theme running through your work is all about where the 'boundaries' are, whether it's about touch, relationships or communication. It's an issue we all need to be aware of, and in general we need to be careful to respect the boundaries that enable us to support people successfully, and challenge the social boundaries that prevent full inclusion.

coffeetalk said...

I completely agree with your view that sometimes disability is translated into an open book for all to read. I work with adults affected by developmental disability and have said many times that too many people see the folks we support naked before they have the right to. A total stranger who is a newly hired staff that's learning the ropes should not be part of personal care until the person is known. We are far too comfortable subjecting the most vulnerable people to things that we would never consider for ourselves. There has to be a better way!

As far as what you owe us.....you don't. I don't share with you personal information about myself and don't expect you to. Know that your readers genuinely care about you, but don't need every detail of your personal life. Take care.

Laurel said...

I think you might get a bit of a double whammy here because many people also expect to hear everything from bloggers who share *some* personal information. Those folks seem to be all or nothing--they don't understand that those who share some thoughts might not want to share them all.

Thank you for asserting your boundaries, as tiring as it may be for you. And I wish you and the others who are in this particular situation all the support and resilience you and they need to address it. Hang in there.

Andrea S. said...

Agreed with the other people commenting -- you have a right to privacy, you have a right to assert that right, others don't have a right to push you to divulge things you don't want or aren't ready to share.

I agree with Laurel that you may be getting a "double whammy" here. Some people seem to think that having a disability somehow removes your right to privacy--even if they insist on denying that they believe this, they still BEHAVE as if they do which really is worse.

Then, on top of that, some people seem to have trouble understanding that, YES, people have a right to pick and choose which information about themselves they share with whom. They can choose to share 98% of themselves with, say, their spouse or partner. And 90% of themselves with two or three incredibly close friends--including a fraction of a percent that they wouldn't share with their own spouse if that's what they choose. And 30 to 80 percent of themselves with moderately close friends, and 20 percent (or 10 percent or none) with the public at wide. And other people don't get to decide what category you put them in or what bits of information you will give to whom or when or in what context.

Noisyworld said...

You don't even know my name, why should I know everything about you? lol
I hope your heart finds the strength to hold what it needs to.

wheeliecrone said...

Dave,
The things that you choose to share in your blog are gifts to your readers. Gifts.
When someone gives me a gift, I do not ask them why they have failed to give me everything they have ever owned, I say "Thank you for the gift".
Thank you for the gift, Dave.

Anonymous said...

Hi there,
I was at your seminar(s) in Moncton last week and was told by fellow colleagues that I would really enjoy your blog- and I do. I just wanted to tell you how strong your statement about "recovering" from difficult encounters hit me. I can't tell you how many times I have told others about how I feel when I *do* confront others regarding an issue... and it certainly can take a chuck out of me for awhile. Thank you for your amazing words and your inspiring blog. You have a new devotee!

Myr said...

I agree with Happy's post about the walled garden, I think I will remember that in future. There is a place that is private for no one to intrude and we are here Dave by your agreement, you are not a performing monkey to entertain us.

Like Happy I have been trying to come up with increasingly interesting and bizarre explanations for how I am just now but for those I know I just tend to tell the truth, it's bizarre enough.

Best wishes Dave

Maggie said...

So sorry you're having this 'intrusion' experience with blog-readers as well as 'real life'.

Speaking as someone who has occasionally asked an absurdly intrusive question (and regretted it later), I notice that sometimes I have asked out of the hallucination that 'knowing someone's diagnosis' would make it easier for me to tailor my assistance to their actual need.

But, even when I'm assisting the person in some professional capacity, this turns out to be entirely horse-hockey. All that happens when I'm told someone's diagnosis is that, instead of listening to the person tell me what, in their personal perception, they need me to do for them ... instead I'm listening to my biases and preconceived notions about their medical condition.

... which seems to lead directly to such ugly situations as assuming that a person with XYZ diagnosis can't do ABC or won't be interested in DEF. Far, far better to ask the individual what I can do for them, listen to their unique, individual answer, and provide what is asked for to the best of my ability.

So yes, let me add my voice to the chorus of 'Thanks for modeling such healthy good boundaries.'

Love and light to you in whatever challenges you face, whether you even tell us about them or not.

Rhonda said...

Thank you for your honesty and for phrasing the obvious in such a way that I have not been able to. As a mother of a daughter with a disability, I am always feeling blindsided by the bold questions that come our way. It's an ongoing battle to set boundaries for both of us.
Whatever is happening in your life right now, I hope you will find comfort soon.

Belly (aka: Liz) said...

This is a not-so-gentle but MUCH needed reminder. Thank you, Dave!

I'm studying DSW at college right now and we JUST this morning discussed this very thing in class.

I'm gonna take this as a sign.

Keep on keepin' on, Dave. Haven't commented until now, but am reading. So very glad I've found you and your voice!

Tony said...

I hope you don't ever feel like the blog is an obligation, especially not talking about individual things.

I can relate to people not respecting privacy etc.