In Between: Walking the Disability Line

This week, the prompt from mumturnedmom is “in between”. I immediately thought of my life as a disabled person. For many years, I’ve thought of it metaphorically as me walking a line between being good enough to be included in the non-disabled world and bad enough to deserve care.

I am multiply-disabled. I reside in an institution with 24-hour care. I am not even in the lowest care category for institutionalized people now that we’ve faced massive budget cuts and the lower care categories got deinstitutionalized.

Yet I am intellectually capable. I am stable enough not to need to be on a locked unit, and in fact am going to leave the institution in a few months. I will then fall in a lower care category, be entitled to less care. Yet I will be able to live a more normal life with my husband.

People often automatically assume that, if you have certain abilities, you are automatically less disabled than if you don’t have these abilities. For instance, I am always seen as “high-functioning” autistic because of my IQ. This is despite the fact that I’m in a similar care category to someone with an intellectual disability who has fewer behavioral challenges, sensory issues, or is more capable in daily living tasks than me.

People also often automatically assume that deinstitutionalization is appropriate only for those with few care needs, those who are “high-functioning” if you will. People don’t take into account that institutional life requires consumers to live in a group setting, which may not be possible for some.

I struggle with this view of disability as a continuum at best and a dichotomy at worst. It makes me walk the line between “high-functioning” and “low-functioning”, when in truth, I’m neither and I’m both and I’m in between.

I am “high-functioning” because of my IQ and my language skills. I am “low-functioning” because of my poor daily living skills. In most ways, however, I’m neither and I’m both and I’m in between depending on circumstances both within myself and in the environment. Yet I’m forced to choose.

And I refuse to choose. I want to be accepted as a human being with her own set of capabilities and difficulties. I refuse to choose between being “high-functioning” and being “low-functioning”, between being dependent and independent. After all, I am interdependent, like veryone else.

mumturnedmom
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3 thoughts on “In Between: Walking the Disability Line

  1. This post plucks at my heartstrings in multiple ways… I am in the midst of recovering from my most recent major depression and struggling to acknowledge my achievements and progress toward wellness while at the same time acknowledging just how debilitated I was and am by my disorders. It’s a difficult thing to bear, to sort through and I think part of that is the “in between” and the both/one or the other existence as I try to regain functionality but realize my limitations at the same time. This may be a confusing and incomplete comment, but I just hope you know that I appreciate your post and so relate to the complex and heavy feelings it refers to. Thank you for posting this :o)

    Liked by 1 person

  2. Interesting, Astrid. ‘The system’ likes to pigeon hole us, stick labels on us, but the truth is none of us are that straightforward are we? We have so many layers and complexities that just aren’t taken account of in the haste to give us a name. We’re all in between in some way, we shouldn’t have to choose x #theprompt

    Liked by 1 person

  3. As Leigh rightly says, none of us are that simple, we are a complicated mix of many qualities, experiences and traits. And, you can’t choose to ignore any one of those. Really interesting and thoughtful post Astrid, thank you so much for sharing with #ThePrompt x

    Liked by 1 person

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