Age: Just a Number?

I’m going to be blunt.

I think we’re screwing ourselves over.

I think we’re screwing ourselves over in far too many ways, in the broad sense of our environment, in the more individual respect of overwork and under care, and in numerous other ways that I mostly avoid thinking about in an attempt to remain optimistic.

But recently, I’ve been thinking about one specific thing that we do as a society that I believe is quite detrimental.

I’ve been thinking about how we deal with age, particularly on the senior edge of the spectrum.

In some ways, we create a lot of accommodations for our elderly. We give discounts, create age specific programming, and construct entire buildings devoted to ensuring their well-being and comfort (ideally).

On the surface, it doesn’t look too bad.

No, we may not revere our elders like some other cultures, but we do take care of them. It may not be personal, and in some cases our systems fail, but we’re still fairly comprehensive in our approach from basic needs to age-specific social activities.

Yesterday I came across and ad for seniors Zumba classes – specially crafted to be easy on the joints.

And that’s all great.

Because the reality is, as humans age, our bodies do tend to fall apart. We stop working, and lose our social outlets. We generally need support on multiple fronts.

And really, after contributing to society for all those years, I’d say we’ve earned that discounted coffee.

But here’s the thing. These people that we’re so considerate of, that we create special programming for, that we classify as a vulnerable sector and volunteer our time to take care of – these people are us.

Us in however many years it takes to reach the status of being old.

And while the programs and support are important and really quite valuable, at what point do we consider ourselves a recipient?

I, at 21, need support. I am mostly housebound. I can’t work or drive, and am quite isolated. I may not have earned anything through years in the workforce, but my physical limitations are similar to a stereotypical 80 year old.

My grandfather at 80, however, is completely eligible for those supports. But he doesn’t need them. He has various health issues, his body aches, he needs to sleep more than he used to, and he has to be a bit more careful when pulling boats to shore at his cottage, but he is perfectly able to live a full, independent, and social life.

And that’s great. It’s fantastic. That shouldn’t involve any sort of problem.

But there is a problem. It’s so big that it comes up in almost every conversation.

The problem is, he thinks he’s old. Everywhere he looks, he’s being told that he’s old.

And, let’s face it – he is (sorry Zaida).

But the thing is, old isn’t a bad thing. It just means that someone has been alive longer than a lot of us. It’s not synonymous with decrepit or useless.

Somehow, though, with all of these accommodations, we’re giving him the message that he’s done. We want to take care of him, and it tells him that we don’t think he can do it himself, let alone take care of anyone else.

We’re saying that he’s done contributing.

And that’s just wrong.

In his case, it’s wrong on all fronts. Not only is he capable physically and mentally, he’s also capable emotionally, intellectually, and in so many other ways.

That’s not the case with every 80 year old. Many struggle in some of all of those categories.

And that’s normal. If we’re lucky, we’re all going to age. And at some point in our lives, are bodies are going to become faulty.

It’s great that we have the resources to make our struggles as comfortable as possible.

And it’s great to have the option of sitting back and ‘enjoying our golden years’.

But to say that that’s our only option, that we’re done once we hit a certain age, or once our bodies start to give us trouble, is ridiculous.

I need the accommodation now. I still have something to offer both myself and the world, and if something were holding me back, it would be a lack of resources and support.

My grandfather is eligible to use the accommodation now. He still has something to offer both himself and the world, and if something was holding him back, it would be the perception that he doesn’t.

I think the resources are great. I think they’re important, and they need to exist. But maybe we need to take the focus off of a certain number. Maybe we need to provide accommodations for those who need or want them, and leave it at that.

We may be old, we may be young, we may be perfectly healthy, we may be extremely ill, but ultimately, we’re still us.

We are individuals who have been on this earth for varying amounts of time, with varying degrees of strength and health.

And as long as we’re here, we’re never done.


Disability: What does it even mean?

I’ve been thinking a lot about disability.

Over the past year or so, I’ve become comfortable using the word in reference to myself. I no longer stutter when I claim to have a disability, and I sometimes write referring to myself as someone who is disabled.

But recently, I was challenged with questions about my ‘disabled’ identity, about the ‘disabled’ community.

And I have to say, it made me uncomfortable. It made me think.

What exactly is disability?

Some people define disability as a social model. Yes, medical impairments and differences exist, but the disability comes from a world structured incorrectly to address them. A lack of ramps, and lack of braille, a need to sit upright to look at a computer, and associated stigma, are what make these differences disabilities.

Other people rail against the idea of separating ‘impairment’ from ‘disability’, because they see them as interconnected, a source of identity, often a positive one, something intrinsic to who we are and what we do. Certain people are disabled, certain people are not.

I’m trying to figure out how I feel.

The thing is, this whole process has been fairly complicated for me.

I was considered perfectly ‘abled’ for the majority of my life. It wasn’t that I was perfectly healthy, that I didn’t have any impairments. I had some hormonal in-balance issues, I got occasional migraines, I probably injured myself and had more aches and pains than one might consider typical and I even went through a summer of severe anxiety attacks, but there was never any question of me not being ‘normal’.

Then, somehow, I became unwell with what I first thought was a very intense migraine, and it didn’t go away. A couple of months in, I started to notice some changes.

Besides the changes in my body, and my overwhelming fear, I also noticed a change in how people interacted with me. Those who knew bits and pieces of what had been going on suddenly got very uncomfortable around me. They would cross the street to avoid talking to me, rolled their eyes when anything medical was brought up, and avoided telling me about their lives, the lives we had shared just a couple of months ago.

It wasn’t out of malice. It was that I had somehow crossed a line. I wasn’t ‘normal’ anymore, I wasn’t one of them, and it was weird.

The thing is, besides the whole being terrified and in pain part, I hadn’t changed. I didn’t feel like a different person. I didn’t feel separate. But somehow, I was. Somehow, I didn’t fit any more.

And I really didn’t need an identity crisis on top of a flailing body.

Fast forward a couple of months and nothing much had changed. My body was still a mess, I was still scared, and people were still avoiding me.

But other people were lovely to me, and strangers didn’t really give me second glance, unless I was wearing sunglasses in winter (which was seen as a strange fashion statement), and I told myself that certain people just weren’t comfortable dealing with illness and that was okay, at this point I didn’t need them in my life anyway.

Then, I went out in a wheelchair for the first time. And while my first experience was that of annoyance – annoyed at not being in control, annoyed that I always seemed to be facing in the wrong direction, annoyed at every curb and bump on the road – I also couldn’t help but notice how nice strangers were to me.

It was weird. Doors would be held open, I’d get extra smiles, and everyone seemed to be going out of their way to accommodate me.

But there was a flip side to the special treatment. The smiles were tinged with sympathy, and the people I knew, the people who were used to me being ‘normal’, were lost for words around me. Some even dismissed the need for the wheelchair, and bristled at any accommodation.

There was no doubt about it. I was being treated differently. It was not just that I had an impairment, a difference, that was being accommodated, it was that I was being seen differently – with the chair, I inspired different reactions than without the chair.

I guess that’s natural, but it did make me think. It still does make me think.

With the chair, as with my neck brace, with my walker, with my canes – I am visibly impaired. Visibly disabled.

Without them, I might be struggling even more, but I don’t necessarily have to face that perception of being ‘disabled’. I don’t get treated differently in ways positive or negative.

But the people who don’t need the visual reminder, the people who know, still react.

So what exactly is the line for being considered a ‘disabled’ person? I certainly didn’t feel any different when I first seemed to be excluded from the ‘normal’ category.

I didn’t feel like a ‘disabled’ person, and the only reason I might now is in large part not because of any of my impairments/symptoms/differences, but because of ways that I am excluded from certain venues, by the smiles tinged with sympathy, by the stares from kids trained not to ask, but burning with curiosity.

There are some wonderful communities online, and about a year into my medical journey I became acquainted with the chronic illness community.

Some aspects of it are not my cup of tea, but other corners are truly amazing. And when I first found it, I felt overwhelmed by a sense of familiarity – here were people who understood what I was going through, who were going through similar things themselves!

So did that give me a home? An identity?

I’m not so sure. It certainly gave me people to find similarities with and bond over our shared experience of being slighted and dismissed in broader society.

But that was only important because I WAS being slighted and dismissed and made to feel different.

I didn’t find any deep personal connection through that method alone though. Being seen as the same and having similar experiences do not necessarily put anyone on the exact same page.

One common thread that I have found through these communities and through my personal experience, is an issue of dependance.

A key aspect of being labeled as having a disability, seems to involve not being able to get through essential tasks without some sort of accommodation.

And that can make those of us with disabilities appear a burden, whether welcome or not, and it can make us feel like a burden.

But the thing is, every single human being on this planet is dependant on others to survive. Some more than others, of course, I mean in my world it is practically expected that we cannot feed or clothe or shelter ourselves, we need multiple other people to do that for us and we compensate them accordingly.

It seems that ‘disability’ comes in when our needs fall outside of socially accepted norms, and when we can no longer cover it up.

And I personally think that’s ridiculous, and not a foundation for an identity, for an ‘other’ way of being.

I mean, everybody will be ‘disabled’ at some point in their life. Everybody will be ‘impaired’. It might be a temporary illness, it might be due to an injury, it might be a consequence of an aging body, and it might just be the way we’re built.

How can something so transient, so universal, be an identity? Be a mark for inclusion or exclusion?

I don’t know that I’d say I only have an ‘impairment’ and not a ‘disability’, because the reality is that I do struggle to navigate the world I live in, and that does affect me. I am so intertwined with my symptoms and experience that I don’t believe I can separate myself from them. The way I plan my day, the thoughts that run through my mind – so much has to do with my experience of disability.

But I also can’t separate myself from the fact that I attended upwards of 9 schools. And I’m not seen or treated as a ‘school switcher’.

I can’t separate myself from the fact that I grew up with an older brother, but I am not labeled a ‘younger sister’ as I go about my days.

I guess I would say that I do have a disability. It isn’t only limited to the world around me, it is all wrapped up in my experience, my likes and dislikes, and my passion.

But so are all of my experiences.

Ultimately, while I guess I am ‘disabled’ right now and while that affects me in interesting ways, I’m just a person.

That being said, these are only my opinions. Many other people who identify as having a disability, having an impairment or a medical condition might not see things in the same way.

But that’s kind of the point.

A Letter To My Neck Brace

To my Aspen Vista Neck Brace:

I first saw you in a picture of another girl. She looked quite happy, posing at a museum in front of a dinosaur, and I didn’t really give you a second thought other than to wonder what your purpose was.

The next time I saw you was deliberate. I was searching the internet for a picture of you as I had just been given a prescription inscribed with your name.

I wasn’t overly concerned with your appearance – if anything I thought you might be less irksome than the foam collar I had previously been wearing around my neck due to your cut out in the middle.

My primary reaction was excitement, because you looked sturdy and I just wanted to try you on and see what happened, see if you could help.

The very next day was the day we met.

It was so offhand, so anticlimactic, the way the practitioner went off to fetch you while I waited to see the neurosurgeon. She handed you to me, suggesting that I try you on right away.

You were a lot bulkier than I had expected. I fumbled with your velcro straps and asked repeatedly for help positioning you.

I felt so uncomfortable, I was sure I was wearing you incorrectly. You were supposed to help, to alleviate my symptoms, but all I was getting was discomfort and pain.

I made it through that appointment feeling very let down by you, but vowing to give you a proper chance. After all, your predecessor – the foam collar – had taken a while to adjust to as well.

Our first night together was memorable for all the wrong reasons. I ended up ripping you off my neck half way through the night after being poked by you every time I shifted, have you jam my jaw, and constantly wake me up.

The next morning I could barely eat breakfast because my teeth were too sensitive after spending the night with you forcing my jaw to clench.

The next couple of days were a blur of frustration. My muscles rebelled against supporting you, my symptoms worsened if anything, I was exhausted, unable to sleep, and I felt betrayed by you. I was considering letting you go, giving up on us.

But then, somehow, things started to change.

I got a new pillow, started wearing a mouthguard, and managed to sleep through the night.

I went for a walk, and didn’t appear to be as drunk as I had seemed before.

My head pain started going down, I was more alert, and it felt like a fog had been lifted.

I started to love you. More than love, I started to worship you. I thought you were my saviour.

The honeymoon period didn’t last very long, and after about a week you started to give me trouble again. My symptoms started reappearing, my jaw and neck periodically began to ache again, and some nights were better than others in the sleep department.

Today, however, things have levelled out. You aren’t a monster, but you also aren’t magical.

We have our ups and downs, but I can say with full confidence that my life is better with you in it.

You mess with my outfits, and make sitting on a couch difficult; you make me choke on water, and make it hard for me to read a menu or cut my food, but when I take you off I miss you.

I know that sometimes I make fun of you, and sometimes I get mad at you.

I know that I test you and you creak in annoyance when I try to move my head or jaw certain ways.

No relationship is perfect, but please believe when I say that I love you, really and truly, and I wouldn’t want to be without you, even for a day.

I love the way I can tighten and loosen you depending on the situation. I love the way you support the back of my head. I love the way you hold my upper spine in alignment, giving me the best posture I’ve had in years.

I love the way you let me walk. I love the way you let me sing.

Thank you for being there and supporting me.