Disability Personal

Enabling Good Lives? More Like The Untrained Middle Man

I am a Enabling Good Lives participant, but right now I feel like a untrained middle man trapped by ever-growing needs and growing guilt.

First thing’s first. This blog probably won’t make sense. Today I’m feeling depressed, anxious, and more than a little tired.

If there is anything I’ve learnt over the years it’s that feeling down is a genuine part of the human experience. Cliché terms like “it’s ok to not be ok” are so repeated these days that the first natural step to countering the feeling of being down is to tell yourself it’s ok.

In fact, it’s a sentiment that is almost ingrained in us at this point.

But after a good week or so of feeling a bit down and telling myself it’s ok to be feeling this way, I haven’t exactly pulled myself me out of the rut in ways I would’ve liked. I actually did some self help on Google by searching how to get out of a rut earlier today – which then led me to spending a solid hour writing a two-page document of all the things I’m feeling, good and bad.

I started with the bad because, naturally, that’s been how I’ve felt as of late.

I then stared at the document, and it didn’t take me long to work out why I’m feeling the way I do. It’s not work stuff, nor is it anything too personal. An inherent realization has dawned on me in recent days, and it’s one I’ve had before.

Here’s that realization:

Enabling Good Lives, as a concept, simply isn’t achievable. Now take that with a grain of salt, because it is just one opinion and it comes from a place of frustration. The frustration is the value part of Enabling Good Lives, because what is the actual value here?

At its core, Enabling Good Lives serves to help disabled people manage their support system, by way of their own budget which pays for said support.

What it doesn’t do, at least in my view, is provide the actual tools to understanding how responsible one has to be in order to do the managing part. From its very conception, I was always told that Enabling Good Lives was a way of removing the middle man and truly taking control of support is a requirement for most who live with a disability.

That support can be mild or intense, but the big mantra is about putting the person at the centre of it all. My question is this:

Do we actually understand what that looks like in practice? Maybe my situation is different to most because I come under the “high needs” category, but I often feel like the middle man at the centre of it all, as if the responsibility for delivering the services has shifted away from others and landed squarely in my lap in some way or another.

Do I like that? No, not really. I’m fully prepared to admit that I strongly dislike having the responsibility. If I am to buy into the values behind Enabling Good Lives, I’m meant to be in charge of it all and be self-determining my own life right?

Wrong. That’s not how it works in practice. How it works in practice looks like this:

You go for weeks, sometimes months, without hearing from anyone who actually works at Enabling Good Lives (or the Ministry of Social Development to be accurate). There is the odd check in, you’re told to just ring if you need anything. Other than that, the silence is truly deafening.

It’s assumed that everything is ok, or at least that’s how it feels.

But as soon as there is a budget issue, like when you overspend for a month because you racked up HR time advertising for and hiring a new worker, you’ll be hearing from someone pretty quickly.

Maybe that’s what triggered all these feelings I am having. I felt guilty for overspending. Typically, I let others manage the budget side of things. That’s what they are paid to do, and yes, when it comes to hiring a new worker, your costs will go up for a period of time on the HR front.

So why does it feel like my fault? Why do I feel like I’ll be punished for it someday soon?

It goes without saying, as a disabled individual with high needs that evolve from day to day, I’ll probably only be needing more support as life goes on. Right now, that makes me feel incredibly anxious, almost guilty, because I can foresee the inevitable conversation about managing my support budget, which really means cutting back not getting more.

This is not Enabling Good Lives, nothing close to it. Last week I had a conversation with a fellow participant who also manages his own support structure, and I asked him how he’s finding the process.

Here’s what he said:

“Honestly Mike, it’s been really stressful.”

I can relate. There are so many cogs to the wheel, and from my experience, it only takes one of them to go slightly awry and the whole thing comes down. It is an inherently stressful exercise where you are the middle man.

As an Enabling Good Lives participant, I’m given the ability to manage my support structure. What I’m not given is the tools to understand what that really means on a day to day basis.

That’s something I have to teach myself, on the fly.

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