I have a question.
One that smells a little bit of self pity.
I was so tired yesterday. Really, really tired. After work Joe and I went to see an small art installation in a public building. We wanted to check it out because it's sounded like something the girls would enjoy. We headed into the exhibit and found that I was only able to see one side of it because it was a 'walk around' and one side was very, very, narrow. I couldn't pass. No one in a wheelchair and no one using a walker could get through the narrow passageway.
Dutifully I went to make a complaint, and in fact I was quite upset. This is an installation in a public building. I spoke to a woman and told her that I couldn't get round the display, that it was set up without regard to accessibility standards and that I was upset for a couple reasons.
1) I wanted to see it properly.
2) How could I bring children to an exhibit where they get to see something cool while seeing me sitting off to the side, not included?
Of course when you make a complaint the person you are complaining to doesn't have any power to fix anything. All they can do is report it to those who do have power. Their job is to let you know that they will do what's in their power (nothing) to let the people in power know. I should say here, that when I said it was inaccessible, I didn't have to explain why - she already knew. I'm convinced they all knew and didn't care. I think they depend on our silence acceptance of purposeful exclusion.
Great.
Now I'm tired from being tired, and I'm extra tired from having to roll over and have this discussion. We went for a cup of tea and talked about it. Mostly we talked about me being so tired. This lead to a chat about maybe a bit of a vacation was needed. Then Joe asked if I would be able to take a vacation, not only from work, but from getting upset and making complaints - verbal or written - when I run into prejudice ... attitudinal or structural.
I paused.
It's not in my nature. I said that to Joe and he agreed.
Here's my question, how do you turn off? Is there a secret to shutting down the advocacy motor that runs in our minds and our hearts.
If you know the answer or have a hint. Let me know.
Because I'm tired.
28 comments:
There is no respite Dave. :( The best I have found to do (except you cannot do that in this instance as you went there specifically to look) is to not look. Turn your head and move on.
Actually your question to us is a question I have wanted to ask you for some time but did not want to be taken as being rude or offensive. I see you as a super hero. The protector of rights for those who cannot protect themselves. I have had you on a white horse with a sword fighting those who do people wrong. I am so glad to see that you are normal! That you are like me! That you get tired and for just awhile you want to just let the world spin around for awhile without you. I'm here to tell you Dave...turning it off..doesn't happen..turning it down..thats possible. You are always going to stand up for people and fight for them. Thats what makes you special. Thats what makes you a super hero. If I were you I would find a place to go that you know if accessible..that has all of your needs..that makes you happy..and stay there for a few days and recharge..then get back out there and do what you do best..fight..fight for you..fight for the person down the street..fight for me..
Dave, I have been an equal rights advocate since I was about 20. That makes over 50 years. I have never been able to turn it off even tho I say I should no longer care. Doesn't make for a relaxing retirement.
I don't know, Dave. I mean - you see and experience the world in a certain way - how do you UNexperience it?
I think I get what Joe's after, though. He wants Dave - his partner, his friend, his love - to enjoy instead of battle; to live in the moment, not analyze the moment; to simply be instead of "be fired up."
He wants what you want: rest.
I wonder if a week or so away in a place that you know is COMPLETELY accessible (is there such a place? If not, hmm......) in nature, among soft breezes and lack of people would be helpful.
Just a place/space in which to recharge, rejuvenate, BE.
Maybe?
I don't know.
Isn't it kind of like breathing at this point?
I think it is probably much easier for those of us who advocacy is part of our job, for you it is life. Just know that you don't HAVE to tackle them all, you make a huge difference by tackling few. Your passion and drive for change in attitudes is comendable and respected internatioanlly, yet everyone knows that everyone needs a break sometimes. It's ok to take a break, and be a part of your community or better yet a nice vacay spot as it is for a week without fighting for change. You can go back to those places after vacation.
i agree with glee.
the way to get a rest is not to see.
head in the sand but still able to stand,
thats me.
but not really how i want it to be.
Dear Dave: you can't turn it off. It is part of who you are. Some time somewhere where you are less likely to encounter exclusion might be nice though. I immediately thought of that lovely cottage in Wales but it is kind of a slog to get there. Is there a Wales cottage like place a little closer to home? I hope you do go and get some rest. We want you to be around for a long time! Colleen
I vote for a holiday away in that beautiful chalet you told us about once. The one in England? Wales? hmm not sure - but it stuck in my mind because you came back from there saying it was completely accessible, almost as if it was personally designed for you.
I'm not an everyday reader of your blog. I hop in every once in a while and am so glad I hopped in today to read this piece. Like so many others, I admire your tenacity and ability to cut through so much bullshit.
I "advocate" for a different cause and just yesterday after a series of obstacles, duplicity, empty rhetoric and bureaucratic nonsense, I was left with a deep feeling of despair and had the very same feeling; for my own mental health, I needed a break.
The truth is, the next morning, we wake up and start all over again. It's in our DNA. There should be a support group...
Hi Dave--I disagree that it's impossible to "turn off" the tiring parts. Learning to rest, to rejuvenate, is a skill like any other. When I found myself burning out and unable to stop, I found DBT to be extremely helpful in building the skills I'd neglected that enable me to get rest. I think that if you want to be able to put up some boundaries, and that is what this is about, putting up boundaries, that it is very possible.
I agree with Sandi. PLAN a vacation, and plan a long enough vacation so that the difficulties (or worries about the difficulties) in getting to and from the spot are far far apart.
You can't stop noticing the barriers and speaking up about them, but maybe you can get away from them for a while.
Oh if only one could turn it off! Stop the madness.
Not have to worry.
Not have to consider alternatives.
Not have to consider the inconvenience of others for our convenience.
If only? But unfortunately the world just doesn't work that way. We see what we see. Not to say or do something to make it better would be beyond what you could expect of your self or of others. I understand Joe's desire to get away from it for a bit. It just really is not who you and Joe are. Be tired for a minute and then get back to your lives. It is OK to not want to have to deal with it but maybe choose your emotions around it. Contemplate how you can ease the anger and the upset. Because it is not going to change if good people like you say nothing, but you can change what it does to you and Joe emotionally.
I have learned that some days I'm merely out of spoons to deal with it and just keep on rolling by. But I've also found, that if I'm with friends or family and they see that I'm too tired to make a complaint, they do it on my behalf which is wonderful because the disabled person should not always be the only one fighting. To fight for change, you need a support system.
But you can't get away from it, or at least I can't, even while planning a vacation. I have to figure out if the place we want to go is physically accessible - where the closest hospitals are - is there a pharmacy that matches the one we use at home - what huge pile of 'supplies' must we take with us - and on and on. Then if I get to our destination and all my planning was for naught, yep, I get a little cranky. If anyone figures out how to turn off the advocacy for just a short time, I also need to know...
drugs?
For people who really care -- there is no "off switch". There is the satisfaction of having your voice saying - even when others do not want to hear. There is the satisfaction when you do see a change == however small. And there is satisfaction, I hope, in that you are challenging others to also raise their voices. Like me. So thanks for constantly challenging and being an example for the girls and your readers.
I advocate for a different specific group within the disabled community, and have for 20 years, so this is the voice of experience speaking .
Advocacy work will eat you alive if you let it. But you can't live on the battlefield and you can't live in your armor. You have to go home, take off the armor, bind your wounds, rest and *heal* before you can fight again. Otherwise you live in a state of continual stress, which is not good for your health.
Some of us can no more quit "advocating" than we could quit breathing. :) We are warriors by nature. But we need to learn to advocate without hacking off our own limbs and bleeding all over the people we love.
They deserve to be our first consideration sometimes over our role as warrior/advocate. It's a 50/50 deal right?
Hugs from Calgary for you and Joe
I had to think about this for a bit as I too struggle with turning off. I just try to remember, I don't have to take on all problems, I cannot solve everyone's troubles, I can only do what I can. I cannot change the world, I can only change my view. Definately need holiday.
I don’t think you can turn it on and off if you are someone who cares – it is sort of like your eye colour – you may be able to wear contact lenses to disguise your natural colour but the real colour is there all the time.
I'm struggling with this myself. When I'm not fully engaged with advocacy, I feel I'm letting the community and myself down. When I'm fully engaged, I'm exhausted.
The latest reframe I'm trying is: I'm always going to be an advocate and educator, but I won't always do it the same way. Some days it's face-to-face. Some days it's write a letter. Some days it's explain how to advocate to someone who's learning. Some times it's a rest period.
Sigh I haven't found an escape other than a retreat inside my home without turning on the TV or radio. But it has helped me to figure out what feeds my internal advocate and do some of that to recover.
Take care of yourself!
My respite is my home! That is the one place I can be where no one can hurt me with their words or attitudes, there is no access challenge, and everything is just as I want it to be! Better yet - you don't have to drive to get there. Unfortunately, that getting away from home thing can be most difficult - I don't have to tell you how hard travelling can be. But if you can get over that part there are plenty of accessible retreats in the world.
I have a suggestion - that may or may not interest you. For one day, journal every act of kindness, inclusion, satisfaction for whatever reason - anything positive. Just focus on what's good - not that there won't be anything negative. Remember Fred Rogers - "look for the people who help . . ."
It would be interesting to hear if that lightens the load a bit!
Speaking up and fighting is what lets you sleep at night. If you stopped, your mind would be running around thinking about all the things you wished you had said. And that's just more exhausting, less sleep and not a fun vacation at all. Hers my game plan: in times when I am amazed and realize how much I have to be grateful for, I breath, take it all in and re energize for the times I need strength to keep speaking up.
When you are tired you don't want to hear that you have more to learn - but...you have more to learn. One - like grocery shopping when hungry, one shouldn't try to do more than "routine" when tired. You are just asking for a trying time. Two - learning to say no is healthy. If you are tired - then don't do so much. Sound simple? It isn't. It took an accident to force me to slow down to realize that I really do have more control than I think. A review of your priorities is in order - Joe should be #1 - and all else will fall into place.
A friend of mine who was feeling negative started blogging "Three Beautiful Things" every day, no matter how small. He's been doing it for years now, and I believe it changed how he perceives the world and how he interacts with it. I know it's made him feel better.
I read all the above posts, and although I agree that there is a Warrior personality, I strongly disagree with the comments that say that it can't be turned off. As I said earlier, it's learning to put up boundaries, and it's a skill like any other. I also do not believe that because one is an advocate, one has a duty to always be on the alert.
Your own well-being has to be pretty high up on your list of priorities, or you slowly (or sometimes explosively) become less effective and unable to continue the work.
I've been pondering about this post for several days. I wanted to respond, but wasn't quite sure what to say. Tonight, while listening to Mavis Staples perform "Why Am I Treated So Bad" at the Toronto Jazz Festival I kept thinking of you and of your post.
http://www.youtube.com/watch?v=puoqzL3rAcI
You and the song writer have a kindred spirit - and the same passion runs through you as the singer. I can't imagine how you could you turn off a gift like that, even though it might it down sides bytimes... (Sorry Joe! :) )
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