Poisonous Expectations

There’s a toxic belief permeating all levels of society: that disabled lives are worth less than able ones. In just the last couple of days there has been a political candidate calling for compulsory abortion of fetuses that test positive for genetic conditions such as cerebral palsy, and a columnist in a national (UK) daily newspaper using the phrase “remedial-level dipshit” to describe children with developmental delays.

I have a daughter. I understand having hopes and dreams of what your child may achieve: that’s only natural. What isn’t natural, or at all healthy, is this cultural obsession with perfection. TV, magazines, newspapers are all full of examples of what is deemed to be “perfect” with public shaming and criticism of those don’t live up to this ideal.

Those with physical or mental disabilities are not spared. Portrayed as objects of pity, a modern-day freak show exhibited so that the able-bodied and those without cognitive differences can feel better about themselves, feel thankful that they are “normal”. And don’t get me started on the patronizing “inspirational” bullshit when a disabled person manages to achieve something that the able take for granted.

There is a high level of disability awareness, for all the good it does. A lot of able people feel uncomfortable around the disabled. It would be nice to think that it stemmed from a sense of guilt over that way they treat us, the way they think about us as lesser people, but I don’t believe that’s the case. I believe it’s because seeing us reminds them that we exist in their “perfect” world, They don’t want to be aware of us; they wish we would just disappear and stop disturbing their comfortable illusions.

The majority of language used in depictions of disability is negative: it’s all about deficits, what we can’t do, how we can’t hope to match the standards set for the able. We don’t need to be told: we’re perfectly aware of the areas where we face limitations and restrictions. The thing is, many of these restrictions in areas such as mobility and communication can be overcome to varying degrees by accommodations.

Yes, it costs a bit more to accommodate people who are outside the statistical normal range of ability. But by failing to provide that assistance the message being sent is that we are not worth it. We don’t matter. We’re not even considered a lot of the time, and when we are it’s grudging.

So it’s no wonder, when we face the constant implication that we’re a burden, a tragedy, that so many expectant parents have a fear that their child will be disabled. It’s their worst nightmare: their expectations dashed, their plans in ruin. They’ve been told time and time again about all the problems faced by families in that situation. The fear is overwhelming and colors their feelings towards the child. It fosters resentment — this disabled child took away their dreams of happily-ever-after.

No. The child isn’t the problem, it is their belief in the lies told by the media and self-interested organizations that led them to think that a “perfect” child would automatically bring happiness. The truth is that happiness comes from love and acceptance, from strong bonds and mutual respect. Society has a sick, twisted, poisonous view of what success looks like, and a long record of destroying those who drink the kool-aid and fall short of the unreachable goals.

Acceptance is the only way to go. Acceptance of people as they are, not how you might want them to be. Acceptance of difference. And just as important, acceptance of self: discarding all the baggage of internalized hatred, shame and guilt. All children have potential, all children take effort to raise, all children are different. Instead of judging them, dismissing them as failures if they don’t meet some arbitrary criteria, help and support them to explore and learn what they can do.

Give them the tools, and see what they can build.

No More Injustice: #JusticeForKayleb

I’m wondering why
They don’t value young lives.
Citations get written
Cos you just don’t fit in
To society’s round hole
You wind up on parole
Through no fault of your own
Your disabled “behavior” —
I’ll give you a flavor:

Kicking a trash can,
School called the lawman,
Up in front of the big man
For expressing your feeling,
The marked cards he’s dealing:
It’s your life they’re stealing.

Your life they’ll shatter
They don’t think you matter
They don’t really know you
They just try to show you
It’s they who are strong
So you must be wrong.

You’re eleven years old
Gotta do what you’re told,
Your life’s bought and sold,
The authorities are cold.
Their response was so drastic,
Charged with being autistic:
So these guys are tellin’ me
Your expression’s a felony?!!

Ignorant and lazy,
These guys drive me crazy;
They don’t care enough
To learn about this stuff,
And providing support
Just isn’t import-
ant to them.

So,

We’re rounding up friends
To make sure this all ends,
The state must make amends,
That school gotta learn,
Their ways gotta turn,
From the bad to the good.
Accept that they should
Support all their kids,
Not just shut the lids
Of the boxes they use
To excuse their abuse
By assigning some label
To say you ain’t able.

Please sign the petition.

Acceptance is…

Are you aware? she asked,
Crushing me beneath her steely blue stare.
Can’t you spare a thought —
Even better, a dollar?
Pity those poor lost children.
Think how hard it is for the parents,
Always wishing, hoping, praying for a
Normal child, a normal life.
Can you imagine the pain
Every day?

I can imagine the pain, I respond.
Such an absence of love would hurt any child.

Looked at constantly as if broken, seen
Only as the wreckage of what might have been,
Viewed as a millstone around the neck.
Excuse me if I don’t accept your hatred.

Prosopagnosia

Stained glass windows to the soul,
Framed by net curtain lashes;
Mere identikit black holes
With no revealing flashes.

I may focus on your lips
Painted crimson or left plain,
Or those cheeks as round as hips,
Forming memories in vain.

Shattered fragments of each face
Put in boxes one by one,
Each component in its place,
Nothing telling where it’s from.

All the features dance and swim,
Never form a single whole.
Makes my intellect feel dim:
Face as hieroglyphic scroll.

Who Are You?

I think a lot about identity — my identity. What terms will I use to refer to myself in my own thoughts and when I speak about myself? It’s something that has changed over my life and especially in the last few years as I’ve accepted that I’m autistic and finally come out about my gender.

Life isn’t static. We are shaped by our experiences, changing over time as we continue to grow and learn — about ourselves as much as the world around us. If we’re honest about it what others see is a reflection of our identity, multiple facets of our personality exerting their influence on everything from mannerisms to dress. But often what we present is camouflage, protective coloration to make us seem to be what we are not so that we appear to fit in with society’s expectations.

I know about this: I presented as male for most of my life, hiding who I was. But it became increasingly uncomfortable to live a lie, unable to be myself outside my own head. It caused some self-destructive behaviors and culminated in depression: it harmed me mentally and, as a consequence, physically as well. Honesty and openness have been good for me. My depression is now manageable without medication and I no longer suffer the negative impulses.

My transition has been the key to this. When I talk about gender transition what I am really describing is a change in gender presentation. My gender hasn’t changed: I’ve always been female. I just didn’t show it openly until recently. The thing about transition is that it’s not a binary switch from one state to another. It’s a process, a collection of changes that proceed at different rates.

Even changing my name is a process. Although from a legal standpoint it changed the moment I signed my declaration in the solicitor’s office, I still had to become used to it myself, to responding to “Alex” rather than “Ben”. I had to change the name in so many places, from driver’s license to medical records, from personnel record at work to email accounts. I’ve not yet completed this process: I still have a pension plan and a couple of credit cards in my old name.

Along with my name there is the important question of what words to use. Because gender affects our language so strongly it has made me think deeply about how to refer to myself, both now and when talking about myself in the past. Especially the past. It can be a little confusing, even for me, so I’ll go through it step by step.

I was born, obviously. I wasn’t “born a boy” though; I was born a girl but assigned male. Given a label, a letter “M” on my birth certificate, based on appearances. It was an educated guess by the medics and it turned out to be incorrect. Apart from my parents’ choice of name it didn’t affect me much in my early years: I wasn’t conscious of gender. I mean, I knew that there were boys and girls and that I was included with the boys, but I never thought about how they might differ. They were just labels with no more meaning than being assigned to one team or another in sports. I was definitely a late developer when it came to concepts of gender.

When referring to myself back then I have settled on avoiding gendered terms. I say “when I was a child” or “when I was growing up”. It’s more difficult when using the third person, but my preference is for something like “I went to school with Alex and was in her class for English”, using my current name and pronouns.

The other tricky area that crops up is when I describe being trans. The commonly accepted tropes, perpetuated by most media coverage, are that a trans person is “in the wrong body” or “wants” to be a different gender from that they were assigned. I see these as overly simplistic.

The way I see it is that I am not in the wrong body. I’m in my body: it’s the only one I’ve got and I’m quite used to it after more than forty years. What is wrong is that it’s a male body; its gender doesn’t match my mind. I think of myself as a woman with a hormone problem that caused me to develop male physical traits. It’s not that I want to be a woman, it’s that I am a woman who wants her body to appear female. These distinctions are very important to me.

To describe somebody as being in the wrong body is to suggest that there can be a separation between the mind and the physical body it occupies. It makes the problem sound like an ill-fitting pair of shoes, as if bodies were commodities to be exchanged at will, and trivializes the experience.

When I hear people say that I “want to be a woman” I get offended. This innocuous-looking phrase invalidates my gender identity, implying that the speaker does not view me as a woman. It suggests that it is a choice I have made rather than a core trait making me who I am. It suggests that being female is nothing more than a lifestyle, an occupation like being a scientist or a pilot. The word “want” also completely ignores the depth and strength of feeling I have about my gender.

So how would I describe myself concisely in alternative, acceptable (to me) terms? I’d say that I am a woman who was assigned male at birth, my body has male features which do not belong there, and I am compelled to change it so that it matches the image I have of myself in my mind.

Why I Don’t Do Agile (Software Development)

Agile software development is a collection of methods for organizing software development teams and their work. There is an emphasis on interaction and feedback, and these methods have proved to be successful when adopted by companies. But it’s not for me.

After such a blanket statement I need to explain what I mean. There are many, many aspects of software development encompassing roles from business analyst to programmer to project manager and beyond. I’ve been a professional developer for nearly 20 years and personally have no interest in any of the roles outside my own: they exist only to facilitate my work by reducing the points of contact between myself and the larger world.

Over time I have evolved a way of working that fits well with my strengths and accommodates my weaknesses. I do best when I have a clear goal, an environment free from aural, visual and tactile distractions, and the minimum of interruptions. In essence it’s a case of winding me up, pointing me in the right direction and letting go; then standing back until I get where I’m going (or the spring winds down).

This works for me because it allows me to enter a flow state and remain there, my mind focused on the task at hand. This is the state in which I am most productive by far, completely in tune with what I’m doing to the point where there is no conscious effort.

This is at odds with some aspects of Agile methodology, in particular its emphasis on team interactions. I spend the majority of my time working on solo projects and don’t fit within any single team along organizational lines. This makes my inclusion within any single team arbitrary; in fact I can’t even remember the name of the development team I’m supposed to be in.

The communication requirements have a disproportionately negative effect on my productivity. I dislike daily “stand up” meetings where I have to listen to incremental updates from the other developers in the team. It’s like enforced socialization, and it might as well be meaningless smalltalk because what they have to say is mostly irrelevant to what I’m working on and hence of no interest.

A meeting is a distraction; it’s like a pothole in the road of my smooth progress. I’m aware when it’s approaching, so I can’t focus fully on my development in the time leading up to it. Participation diverts my thoughts from their work pattern and it’s as if the mental images I’d been constructing fade and disappear. All the work I did to build them is lost, and I have to spend a significant length of time just getting back to where I was before the interruption.

If you’re part of a team that uses these methods you’re expected to be involved in all of them. I have conflicting needs when it comes to communication: I function at my best when I have control over when and how I communicate. In practice this means short one-on-one interactions when I need some information, and non-verbal communication for things like progress reports so I can just post them some place where anybody concerned can read them without directly contacting me.

The problem I have with Agile software development is that every incarnation I’ve encountered has been a one-size-fits-all suite of buzzword-heavy methods, the majority of which are well-established working practices with new names to make them appear innovative. There is undue emphasis on the methodology as opposed to simply getting the job done. I’m strongly in favor of effective working practices and I actually use many of the methods collated under the Agile banner. But I don’t call the way I work “Agile”: using a wok doesn’t make your meal Chinese.

Earthbound

A bright spring day.
Blue sky, warm sun,
Should lift the gray
That fetters me.

I long to leap,
To dance and twirl,
No longer weep
Borne down by weight.

In dreams I soar
And spin, arms out
As rainbows pour
From fingertips.

Barefoot I flit
Through grass so sweet,
Then come to sit
Beneath a tree.

Beside a stream
Whose sparkling flow
Reflects a dream
Of starry night.

When embers rise
From friendly fires
Towards the skies
And join the stars.

I wish I could
Rise up so free
For then I would
Truly be me.

Waxing Lyrical

Livin’ on the edge, jaded,
I wanna know why I’m down.
Tell me what it takes.

Same old song and dance,
Round and round,
You gotta move full circle.

You see me crying.
Write me a letter, something
Stop messin’ around.

My girl never loved a girl.
Think about it: crazy.
Ain’t that a bitch?

Drop dead gorgeous angel,
Under my skin no more:
No more monkey on my back.

Something’s gotta give.
Movin’ out no surprise.
Kiss your past goodbye.

Pride Positive

I’m proud and I’m not ashamed of it. Pride attracts a lot of negative responses: it’s named as one of the seven mortal sins in the Christian faith and it’s all too often conflated with egoism and hubris. I will argue that feeling pride is a good thing, a positive response to positive actions and circumstances.

To begin we need to define what pride is, and the first part of that will be to remove any confusion by identifying what it is not. Pride is not the excessive, self-absorbed arrogance of hubris. It is not the over-estimation of one’s own abilities, nor is it the egoistic self-congratulation of the narcissist.

Pride is a recognition of one’s own worth, that deep satisfaction which results from a job well done, an uplifting feeling of self-esteem. Pride is the natural step beyond simple self-acceptance: once you have learned to accept yourself as you are then it follows that you may begin to like yourself, to derive pleasure from aspects of your identity. I put it to you that being proud of who you are, of what you have achieved and what you may be capable of, is an act of love: to love yourself is to feel pride in yourself.

Pride is entirely a positive emotion. It arises when you feel good about yourself, when you feel worthy. It is empowering. In many ways pride is opposite to embarrassment; where embarrassment is the acknowledgment of failure, pride comes from success. Being proud is a celebration.

So when I say I am proud to be autistic, proud to be a trans woman, proud to be Lancastrian and proud to be married to Anne it is an indication of the high value I place on these things and the degree to which they form part of my identity. My pride is my internal celebration of them, my recognition that they shape me and make me the person I am. My pride gives me self-belief and the strength to deny any who would put me down. They cannot belittle me because I know who and what I am and where I come from: I know I’m worth something.