Monthly Archives: August 2015

Sick? Ill? Disabled? How do you identify? Why does it matter?

Back when I worked professionally with people with developmental disabilities, we learned to say “people with… disability”, versus the unfortunately more common label of someone as “disabled”.

This distinction helped me discover that the idea of “disability” was a continuum, and that in some ways, the primary difference between me and “them” was that their disabilities were obvious. I could hide my “disabilities”. And even with my current conditions, most of the time I still can. Lucky me, right?

compromised vision is a disability we don't even think of as a disability anymore...
compromised vision is a disability we don’t even think of as a disability anymore…


But this begs the question around self-identification. We (with “invisible disabilities”) have the “luxury” of NOT thinking of ourselves as part of that group of people known as “disabled”. And I bet most of us choose that. Understandable choice, but there are costs!

One cost of choosing not to identify as part of the group of “disabled people” is to perpetuate the stigma society has towards those with obvious disabilities – the stigma that they are somehow “less than”. That’s bad enough. Perhaps a more malignant cost is that if we’re not “disabled”, then we must be “normal”. The cost of that belief is to continuously set ourselves up to try but fail to meet all those internal and external expectations about “normal”. Ouch…

So forget normal… Why not think of yourself simply as a person with a disability or disabilities – certain things you’re can’t do like you once could. Accepting that (with regular practice) sets the stage for adapting, and learning new ways to live and experience those things that matter the most (versus living a life of regret and bitterness).

Which reminds me of a quote…

I always wondered why somebody doesn’t do something about that. Then I realized I was somebody.” Lily Tomlin

You may be the only somebody to do something…   ~Z

Are setbacks setbacks?

I’ve had some “setbacks” lately.

Some opportunities that don’t seem so much like opportunities now. A few “relapses” in my health that “shouldn’t” have happened…

And I’m realizing (again…) that judging events to be “setbacks”, or “disappointments” or

If coffee can smile, surely you can too?
If coffee can smile, surely you can too?

even “failures” is my choice. Things happened (or didn’t happen the way I wanted them to), and they are done.

What if they are fundamentally neutral events? And I, due to my expectations and hopes, have colored them as “setbacks” without even thinking? Well I have, and that’s my point – that it’s an old and unhelpful habit.

In fact, my resistance to the things I’m experiencing is yet another layer of drama and suffering I’ve added to my life (I bet I’m the only one ;-).

Consider this: When something happens that you automatically react to as a setback or a problem, you have a couple of choices:

  1. You can “re-do” how you react to it: Disappointment/anger/fear/sadness are legitimate options. So are gratitude and joy. So is a smile. It doesn’t have to be one or the other!
  2. And then, since I’m not dead yet, I get to choose what to do next: “This being the case, how shall I proceed?” as the saying goes… Is there an opportunity here that didn’t exist before?

Many events are simply information AND a sign that you are making movement in your life. The only way to know if Plan A is really a good opportunity is to give it a go and see what happens.

Regardless of the outcome, you can still smile…   ~Z

Care-taking vs. Care-Giving: How we disempower ourselves and others – Part II

Care-taking is an act of aggression. If you’re not ready to swallow that, read Part I  again.

When I do something that appears to be FOR you but actually is for ME – is that not similar to passive aggression? Except it’s not passive, it’s active. Passive aggression is an indirect form of resistance or hostility – like being late or “forgetting” commitments. Care-taking is more nuanced and sophisticated than that – it is aggression disguised as “doing something nice”. It is doing someone a favor that they didn’t ask for (and still expecting gratitude). Isn’t that f**ked up?

A paradox of care-taking, is that when we care-take, we hurt ourselves as well as perpetrating on others whom we need for support: friends, family AND paid professionals and caregivers.

To be sure, there are also times when we DO need to be rescued...
To be sure, there are also times when we DO need to be rescued. But it’s still our choice…

It’s like this: If I don’t ask you for something I want or need – using the “story” that I’m protecting you as an excuse (because you are SO busy with other things more important than me…), I’ve done a disservice to both of us. Do you get how that might be care-taking? Because by NOT ASKING, I am avoiding MY possible discomfort of you saying “no” – or my discomfort of possibly causing you discomfort.

By the same token, if I let someone care-take me with their ideas of what I need, I’m giving up my power and frankly disrespecting them by pretending and withholding my truth.

Both cases – though examples of NOT doing something – (the more “active” type of ca-taking will be explored in Part III) – could be viewed through a lens of dysfunctional rescue – I’m rescuing you even though you may not need rescued. There’s nothing empowering about that – for anyone…

Care-taking is a lose/lose proposition. Nobody wins. Yet we tolerate it because it looks like everybody wins!

Sneaky little thing that…   ~Z

Care-taking vs. Care-giving: How we disempower ourselves and others – Part I

Have you experienced well-meaning people in your life doing something for you in the spirit of “helping out” or “caring” for you, but the impact wasn’t helpful or empowering? Maybe their “help” actually created new problems or left you feeling weaker?

To help unravel this curious phenomena, I’m going to write about from a first person perspective…

Here’s the deal: care-taking is a selfish, not a generous, act. When I “care-take” you,  I am actually putting my needs first.

Help is only helpful if it fits the actual need...
Help is only helpful if it fits the actual need…

Here are two forms care-taking often takes:
1) False Reassurance: I touch you and tell you “everything will work out in the end”, “It’ll be okay”, “This too shall pass” etc.
2) Forced Solution: I offer (or do) what I think I would want in your situation, e.g., I give you a hug, hold your hand, bring over lots of friends, leave you alone, turn up the heat etc.

There are other versions too, but what they ALL have in common is they are attempts to:
1) FIX your problem (WITHOUT asking you what you want).
2) Make ME feel better (less helpless or confused)

The impact of care-taking is to steal a little bit of power, independence – and perhaps self-respect – from the recipient of the “care”. Care-giving, on the other hand, leaves one feeling stronger and respected and more  empowered.

There’s more to it than this, but this is good starting point.

I’m not out to help you demonize those people in your life for whom you rely on for support. So the question to consider, is “Where are you care-taking others?”. Where are you NOT asking for what you want because you’ve already decided it’ll inconvenience or burden them (without checking in with them)?

More on Friday…    ~Z

How good are you at setting limits?

I write often about the art of learning to set limits for myself and boundaries for others, because I find it to be a challenging and sometimes complex maze to weave through daily. Partly because setting and honoring limits doesn’t come naturally to me. Partly because I’m still a little pissed I can’t do everything I want, whenever I want. Partly because I’m different everyday and can’t confidently predict how I’m going to feel tomorrow or next week.

Limits and boundaries free us up for the things that bring us alive!
Limits and boundaries free us up for the things that bring us alive!

And yet setting limits cleanly and honoring them, is easily the most important new skill I’ve developed as a person with chronic health issues. When I do it well, I’m better off. When I don’t, the cost can be high. The essence of that cost is that I lose at least a little – and sometimes a lot – of my independence and freedom about how to live my life. My options are few when I’m only able to lie down or sleep…

Of course, knowing and doing are two different beasts. So the act of setting a limit/boundary and honoring it – is in fact a skill that can be learned. If you’re already good at it great. If you’re not, can you let yourself be “not good” at it and try it anyway? Can you practice? Can you set the intention of “growing that muscle” of setting limits or boundaries and approach it with curiosity and self compassion?

Can you have faith that, while it may never be easy, you CAN get better and experience less suffering?

Can you give yourself permission to start practicing the art of honoring what you know to be your limits with one small step today?   ~Z

“That doesn’t work for me”

“That doesn’t work for me.”

“I don’t do that.”

“That’s not a good idea for me”

Hopefully you’ve got a version or two of these phrases for yourself. If you don’t, get some words like this and load your chambers so you can fire off this simple boundary whenever you need it. And by “need” I mean your new need to protect the really important things in your life – the things that are indeed more important than the price you might have to pay if you were to say “yes” to whatever you’re saying “no” to.

And there’s another plus: When you have your own simple phrase of self-protection, you are stopping a flood of energy-sucking excuses (or lies) – OR long-winded explanations about how “I used to be able to do this or that but nowadays with my health… etc. etc.”, from drowning out truth and heartfelt connection with yourself and others.

Your boundaries are really YOU consciously deciding what gets through...
Your boundaries are really YOU consciously deciding what gets through…

It’s not easy. Keeping these flood waters out may require frequent sandbagging of leaks and breaches. But I think this can indeed be a situation where the “best offense is a good defense” as they say – yet another form of investment in a future worth loving. Yet another tool to help you  be at peace with your limitations and keep them out of the driver’s seat of your life.

There’s an honesty in saying “no” in a clean way without excuses or story. Try it out. Have a little faith that the people in your life will begin to respect you just a tad more when you say “That’s not gonna work for me”.   ~Z

How good are you at accommodating your new limitations?

“But I can’t do that anymore!”

Do you hear this voice in your head?

Maybe it’s true. But sometimes it isn’t. Sometimes that voice can also be an excuse for not getting creative about finding accommodations or “work-arounds” or supports.

Obvious examples of supports might be crutches or walkers for folks who otherwise couldn’t walk. Hearing aids. Lever style door handles (nice if you’ve got arthritis). You get the picture (if you’ve got your glasses on or contacts in ;-).

Supports (another word for accommodation) hold up the things that matter...
Supports (another word for accommodations) hold up the things that matter…

Notice how the examples above are physical devices. They’re also mostly cultural acceptable. These are the “easy” ones…

The hard ones are those (if you want them) that you have to concoct, create, devise, or cobble together yourself – that are more about strategies than technology. The point is that they are approaches that support you to do the things that matter.

Let’s say it’s important to you to eat well, but it’s no longer easy to cook regularly. You might accommodate this limitation by finding more simple recipes, or cooking large batches and freezing meals, or getting help. Or, maybe you prepare food in stages, like cutting the vegetables or measuring dry ingredients the day before, or even buying components already prepared (yes, there are bags of already chopped onions, and you are not a bad person for using them).

Yes, yes I know… in this example, it will take more effort to change strategies – like looking up new recipes or actually planning! So consider creating accommodations and supports as an investment in you and your future. An investment that will pay dividends for a long time, and keep you in integrity with your higher values and priorities that you KNOW to be true about you.

You got something better to do?   ~Z


Are you being prejudice against yourself?

There’s a phenomenon called “internalized oppression”, defined thus: “The process by which a member of an oppressed group comes to accept and live out the inaccurate myths and stereotypes applied to the group.” from

You've got enough problems without being your own enemy...
You’ve got enough problems without being your own enemy…

Unless you grew up on the moon, you absorbed various negative stereotypes about various kinds and groups of people – including people with disabilities or with chronic illness. Internalized Oppression is when you turn those negative judgments against yourself.

In general, your Internal Oppressor is going to reflect cultural attitudes that people who are not “fully able” are somehow less than. All you have to do is look at how we (as a culture) treat folks who live in nursing homes, who use wheel chairs, or who can’t see or hear. But this ain’t about “we”. It’s about YOU.

To get a taste of your self-trash-talk, carefully notice the stories you tell yourself the next time you run into someone “worse off” than you – say at the doctor’s office, or at work.

Because whatever you’re telling yourself about “them” to elevate yourself above them (“I’m not like that!”), is quite likely a version you’re telling yourself about yourself – and it’s something about being “less than” everyone else. And I’m guessing that if you’re sending those messages to yourself subconsciously, it’s contributing to some kind of self-sabotage.

Maybe you’re not advocating for yourself? Maybe you’ve slipped into fear, anxiety and/or depression? Maybe you’re giving up on fighting for something that matters? That job you want? That sexy single colleague or neighbor?

If this sounds familiar, consider starting with the stories you make up about others. See if you’re repeating a version of them to yourself about yourself.

Think up a new story that is TRUE about you. Repeat… ~Z