World Down Syndrome Day

I’m not a person with Down Syndrome and sadly I don’t currently know anyone who is. I do, however, know that the 21st of March is World Down Syndrome Day and since I have a blog now I thought I’d best make sure my readers know that too.

I believe it’s very important for disabled people to stand together in solidarity with each other and fight for inclusion for all, not just people with the same impairments as us. I know that sometimes it’s tempting to paint ourselves as a group that is easy to include in society not like those other disabled people who need 24 hour support / who can’t talk / who can’t work / whatever but that’s really not a good way to do things. In little impairment-specific groups, we are tiny minorities. All together, we are one huge minority (making up at least 10% of all people depending on which impairments you count in). So, it’s important that I highlight the day and we all do what we can to help other disabled people.

I’ve spent the best part of an afternoon searching unsuccessfully for the blogs of people with down syndrome to link to. I’ll have to try harder and would greatly appreciate links to blogs of people with DS in the comments. I’ll likely read parent blogs too but I’d like to first get a good grasp of what people with DS think about issues which affect them.

What I have found that I hope will be useful are some organisations which look pretty good to me as a disabled adult and seem to be doing the kind of things I’d want autism organisations to be doing.
My criteria were:

1. Actively includes adults with Down Syndrome as well as children with Down Syndrome and their families
2. Any research focuses on stuff that will actually help people with Down Syndrome rather than focussing on preventing them from being born in the first place
3. Supports people with Down Syndrome advocating for themselves rather than treating them like eternal children
4. Lobbies for change in laws,policies and practices to further inclusion of people with Down Syndrome
5. Has no view on the ethics of abortion (a number of Down Syndrome organisations are very pro-life which, while I find it quite understandable, would potentially upset, trigger or put off many people)

So, with those criteria in mind, I’d like to direct UK readers to the Down Syndrome Association and US readers to National Down Syndrome Congress. Both have ways to donate, get involved or learn about how people with Down Syndrome live in those countries.

I’d also like to direct you towards this man with DS’s T shirt shop.

And finally, even if you do nothing else as a result of reading this post, please, please go and look through the photographs of and by people with Down Syndrome on this website as it will challenge and change any ideas you may have had about what people with Down Syndrome look like and what jobs they do.

Making the best choices we can make with what we have

As more and more people find themselves aware of the existence of transgender people like myself and particularly of transgender children, I keep seeing a particular comment appearing again and again across various blogs, online newspaper and magazine comments, TV / Radio call ins, Twitter… everywhere. The particulars and the person changes each time but the story is incredibly consistent.

It goes something like this: “When I was (childhood/teen age) I did (gender nonconforming actions x, y and z) and I wanted to be / thought I was the opposite sex! If my parents had thought I was transgender, I could have ended up transitioning but as I am now happily cisgender that clearly would have been a mistake! I am worried that trans kids/teens/people in general (or trans kid/teen/person mentioned in article) could be making a terrible mistake like I would have done if I’d known about trans people when I was younger!”
After telling this story, the commenter will usually suggest that parents shouldn’t allow children to socially transition and/or that puberty blockers and hormone replacement shouldn’t be given to under eighteens and/or argue that no one should transition at all.

I do not in the slightest doubt that a great number of people have had “cross gender experiences” or have had fantasies of being or becoming another gender. However, I do think there is a lot wrong with the argument that these commenters are putting forward.

The main problem that I see with this argument is a conflation between the writer’s current lack of desire to transition with the idea that had they transitioned earlier in their life that would have been a mistake. From the fact that someone is cisgender now having not transitioned, it does not follow that transitioning at an earlier point in their life would have been wrong for them then. Just as it doesn’t necessarily follow from the fact that I am a happily transgender man now having transitioned at age nineteen that it was a “mistake” on my part to remain closeted about my gender identity aged ten – and I say that in full knowledge that going through a hormonally female puberty has made permanent and irreparable changes to my body.

As strange as it might sound, I can think back to past, closeted versions of myself and understand that he/I made the very best decisions he/I could with the information he/I had available. Those decisions have had effects that I regret – both physical and mental effects that cannot be undone – but I cannot say that my past self made any kind of “mistake” in making those decisions.
If there had been the much higher levels of cultural awareness of trans people that there are now, possibly my parents would have known much earlier that their eldest child was a transgender boy, maybe I would even have been able to attend secondary school as a young man who looked like a young man instead of one who looked like an awkward, androgynous young woman. Who knows? That’s not what happened and if it had happened, I wouldn’t be the same person as I am now.

The same is fundamentally true of all those commenters. We can’t know how things would have gone for them, because that isn’t what happened. Maybe they would have spent some time living as another gender before growing up to be cisgender adults. Maybe they would have spent no time living as another gender as children but become crossdressers in their teens or discovered drag. And maybe they would have grown up to be trans adults.
Yeah, I’m saying it. The fact that someone grew up to be cisgender when never really given an option doesn’t mean they might not have grown up to be trans if given that choice. And it would not necessarily have been “a terrible mistake”.

There’s this idea a lot of people, both transgender and cisgender, have that one should only transition socially or medically if that’s the only choice you could make that involves staying alive. What this essentially means is that many people believe that if living in your birth gender doesn’t hurt or only hurts a little bit or hurts quite a lot but you can live with it, you should keep living as your birth gender. I’m going to call bullshit here. If you think living as another gender or spending some time dressed as another gender or privately considering yourself to be a different gender than your birth gender will make you happier than not doing anything, you have every right to do those things. Whether you’ve got one life or there’s an afterlife or reincarnation, you’re here now and you deserve to be happy. If something might make you happier and it’s not hurting anyone else – go for it. You might like it and continue or not like it and stop. Both are okay outcomes and you’ll have learnt something about yourself. This is why I don’t think it would have been a mistake if any of those commenters had explored their gender as kids/teens – if it made them happier that would have been great, if it didn’t they could change their minds. Neither outcome would be wrong.

Growing up to be trans is not a worse or better outcome than growing up to be cis, just a different outcome. I’m sure we can all recognise choices that we’ve made in the past that have shaped who we are – choices we might have chosen differently and would be very different people if we had. Think of what subjects you choose to study at school/college/University – those can change your options for future careers. There are choices I could have made which would have opened up doors to becoming a research scientist by now. I closed those doors when choosing not to study science subjects at A level. I could, in theory, do a whole lot of work now and open those doors again if I wanted to but it would be difficult. I view choosing what gender to live in for a time as quite similar.

No matter how long you’ve been living in a gender, you always have the opportunity to choose to live as a different gender for a time – whether that time is an hour or the rest of your life. Even if hormones (whether from your gonads or from medical treatment) have made changes to your body, even if you’ve had surgery on gendering body parts, no matter what your sex chromosomes are – the choice is always open to you.

If you don’t want to choose to change how you live your life genderwise or how you consider yourself today, for whatever reason from “I’m happy right now” to “I want to wait until I move out” to “Maybe someday but I’m not ready yet”, you can choose to keep living the way you are. That’s okay. If you want to change, you can and that’s okay too. Maybe you’ll change back, maybe you won’t but it won’t ever be a “mistake” if you’re making the best choice you can make for you based on all the information you have.

It really is just like everything else. We’ve all got things we did in the past that we wish we hadn’t done, but if we think back and have some sympathy for the person we were we can see that we did the best we could with what we had.

I know that a lot of people struggle with “choice” language around transition but remember that emotions and thoughts and feelings and desires are all information available to you when you make choices. That choice can be as simple (or difficult) as what to wear today or as diffiult (or simple) as the choice to come out as trans. Make the best choice you can taking into account your thoughts and feelings and desires and any other information you need and I can’t promise you’ll never regret anything or you’ll never change your mind but I know you’ll not make the wrong choice for you as you are right then.

All your tests came back normal!

I know my test results are back. I can’t bring myself to go to my GP surgery and ask for them. Not just because at my surgery you need special written permission from your GP to get printed copies of your own test results (because of “data protection” according to the reception staff) and instead must have your results read to you from a screen by a receptionist with no medical training.

No, that’s not why I’ve been unable to take myself to the Surgery and ask for my results from the latest battery of tests my bodily fluids have been subjected to. No. I’m afraid of the results themselves.

I’m afraid that every single last test result will be “normal”. And the receptionist will smile at me and be unable to understand why I can’t smile back and instead make a doctor’s appointment for as soon as possible and just leave.

And why wouldn’t I be happy to hear that my test results all came back “normal”? Surely that means I’m well and okay? Well, no, actually it doesn’t.

I’m chronically ill. This means that I’ve been ill for a very long time and my doctors don’t expect that I’ll ever truly be well again. I’ve been outright told by my GP that we’re past the point of looking to “cure” me and are just trying to work out what illness I have in order to have a better idea of how to manage my symptoms.

So those “normal” results represent to me a dozen or so different educated guesses from my specialist that could have been what is wrong with me but weren’t. They represent months and years of further searching, the fact the phlebotomy staff are starting to consider me a “regular”, the lasting uncertainty about what my body is doing and the ever decreasing chance that maybe, jut maybe, the illness that has taken over my body is something for which there is a cure.

“Normal” test results don’t mean I’m well, they mean I’m still ill and no one knows why. “Normal” results don’t mean I’m not in pain – they mean the pain relief I have so far is still a guess at what might help. “Normal” doesn’t even mean that my illness isn’t deadly or progressive – it just means a great big We Don’t Know.

I try not to but every battery of tests I think that maybe, just maybe, this time will be the time that instead of ruling loads of stuff out, we finally get to rule something in and say “We know what this is now; we know what to do.”

I’ve written this because there may be chronic ill people in your lives who dread the “normal” test results and like me feel like crying when they hear them. I’ve written this because some people behave like those “normal” test results mean the illness has gone or was never there to begin with. Whilst that might be true for many people, for those with chronic illnesses such test results mean more tests, more waiting, more time living with symptoms that are unexplained , more uncertainty about the future.

That’s why I am afraid of my test results. I want to know what’s happening to my body and why and what happens now. Each set of tests I’ve done so far has raised my hopes that this uncertainty will soon end and each time those hopes have been dashed by a smiling receptionist saying “Good news! All your tests came back normal!”

Access needs – not what people seem to think they are

So, unless you’ve genuinely never come across disabled people’s activism before, you probably have a vague idea that there are different models of disability and a rough grasp of what the Social Model of Disability is. I’m not going to assume any prior knowledge here so consider the first part of this post to be a quick intro / catch-up lesson on the Social Model. Skip intro.

Two Models of Disability

There are more than two models of disability that people have come up with but there’s two directly competing models which underpin most people’s ideas of what it means to be disabled. Whilst no one actually thinks that any particular model is exclusively right for all disabled people all the time, to a certain extent you can tell what model(s) a person has internalised from what they say about and to the disabled people they encounter.
The two models that underpin most people’s thinking are:

• The Medical Model – disabled people are disabled because they have bodies and/or brains that do not work properly. The way to solve this is to “fix” the individual person’s body/brain until it functions normally or at least looks like it functions normally. It is sad that some bodies/brains simply cannot be “fixed” in this way and those people will be unable to fully participate in life because of they way their bodies/brains work.
• The Social Model – disabled people are disabled because society has been built by and for abled people and in a way that actively excludes disabled people. Buildings, policies, cultural practices and everyday objects have been created with a false norm of human ability in mind. This norm can and has changed – the normal human is now expected to be able to read (making those whose brains do not find reading easy excluded) and glasses are inexpensive and easy to wear (meaning people who would have been regarded as blind a century or two ago an be fully included). The solution is to challenge and change the norm to include everyone, with no expectation that all adult humans will share some particular abilities and products and practices designed with the intention to include as many people as possible. In the mean time, making adjustments to practices, spaces and expectations to intentionally include whose who are often excluded – for example providing large print menus in a cafe, hosting autism friendly film screenings or rearranging a meeting to a space that is already wheelchair accessible.

The essential difference between these two models is where they locate the “problem” of disability and where the solutions. The medical model places the problem of disability on the individual – it is their body that is wrong where the social model places the source of the problem with society for not trying hard enough to be inclusive. The medical model places the responsibility for solving disability into the hands of doctors and doctors alone. The social model places the responsibility for solving the problems caused by disability onto every single one of us to do what we can to ensure that we are not accidentally shutting people out.

For more on models of disability, try this art piece by Ju Gosling or browsing the various models on this site or reading this booklet.
There’s a lot more information available on the internet about the various models of disability.

Right, having gotten through or skipped over my badly-worded intro to models of disability you can now get to the main post.

I’m a disabled person, I’m also a student and an active participant in my student union’s politics as well as it’s social events.My SU, the NUS as a whole and my University all currently have policy that says they support the social model of disability. This means that they have policy which says that they do not consider disability to be an individual problem to be worked around by the individual disabled person but a societal problem that it is up to everyone to work to solve.

So far so good. Yet, in my dealings with all three institutions, the University, the Union and the NUS, I’ve seen a pattern of actions that suggest that whatever model of disability they’re using it isn’t the social one.

This pattern concerns asking people what their access needs are.

Asking people what they need is a good thing and I commend the Union for asking all candidates for the recent elections to provide their access needs and the NUS for asking this of all those who attend their conferences BUT in both cases this question was asked of people who had little or no idea of what they were going to do and so no way of working out what they would need in order to access the election / conference. My University does not ask all of its students for their access needs but does ask those who identify themselves as disabled – again usually before they have any idea what their course will involve and can only guess what kind of help they will need.

What follows is often a very inaccessible event where the Union / NUS / University can say “But we asked you what you needed and you didn’t tell us!” or “But we did what you asked us to do!” and claim that they have been as inclusive as they possibly could be.

This betrays that the people who ask the question “What are your access needs?” don’t really understand what they’re asking and are possibly slipping into thinking of “disability” as an individual’s problem caused by the way their body works. Disabled people do not have handy lists of our needs that we can email you as the answer to that question and it would be useless for us to try to make such lists in the first place.
Why? Because I don’t have access needs full stop, I have access needs with reference to particular activities. I can only tell you what adjustments and help I will need if I have been given full and clear information about what I will be expected to do. Without this information, I am left guessing and asking myself things like: Will they expect me to stand for more than five minutes? Or navigate a crowded room on my own? Or walk up and down any stairs?

I’ve run in student elections here and helped other people to run. Apparently, the organisers of student elections here thought they could assume that all candidates could: walk down a flight of stairs, climb onto a two foot high stage with no steps, get themselves home late at night, be at events every evening for over a week, see powerpoints that were not described, stay for hours in a loud, crowded room with flashing lights etc etc Am I to guess that all these things will be expected of me? I don’t think they are reasonable expectations at all – and those expectations are  disabling.

Actually following the social model requires being actively inclusive – making sure every event is as accessible as possible. Which means ground floor level access, no assumption that every one can read the powerpoint, making sure people will be able to get home from late night events, making sure you’re not expecting people to repeatedly attend both late night and morning events, all speakers using the microphone, sensible volume of music and somewhere quiet set aside to go, seriously questioning the use of flash photography… Yes, it requires a lot of thought and it seems easier to just lay the responsibility with the disabled people themselves but really when you won’t put the thought in to make what you do as accessible as it can be, the message us disabled people take home is that we’re not really wanted and your event isn’t for people like us.

So, to sum up:

• Put thought and effort into making your event as accessible as you can to begin with.
• Get out as much clear and detailed information as possible about what will happen at the event in advance.
• Include specific information about access in advance. Use something like this access statement generator.
• If you know who is attending the event (i.e. candidates, speakers, delegates etc) provide them with all the access information and event information and ask them to contact you if they need any access adjustments or want to clarify something.
• Make sure all possible attendees know how to contact you if they need specific adjustments you’ve not already thought of or extra information about access.
• Congratulations, you will have done the bare minimum in actually following the Social Model in creating your event.

More about food, ethics and mental health

Further to my previous post, there’s more to say about how changing what you eat an affect your mental health. I don’t mean in the “Eat more fruit to be less depressed” way (though getting enough vitamins and good stuff into your body can certainly help you to feel less bad).

Food is an essential and more or less inescapable part of our lives. For most of us eating is both a frequent and a multi-sensory experience and an experience capable of being very pleasurable. We combine foods to make a near-endless variety of dishes with their own tastes and smells and textures. Food is wrapped into our cultures and our relationships. Because we eat so often, what we eat can often become intensely associated with who we eat with, where we eat and how we feel when we eat. Certain foods may remind us of people and places from our pasts and stir up memories that may be happy, sad, nostalgic or traumatic. Some foods may help us to feel loved and welcome; other foods may make us feel disgust. For some people, particular foods may be so strongly associated with a painful or traumatic event that they cannot eat them.
In short, food is much more than fuel for our bodies and sustains us in more ways than merely keeping us alive. Food has a huge and complex role in our emotional and social lives.

So when we change what we consider to be food, that’s not the only thing we’re changing. Inevitably, when changing what we choose to put into our bodies, we are also changing routines and practices we didn’t know we relied on to help us feel safe and grounded.

This goes for whatever reason to change a diet – a new intolerance or illness, a pregnancy, living in a new country or with a spouse’s family for a period of time, a wanted change to exclude some foods and/or include many new foods. Things change in ways you may not have anticipated because for many of us what we eat and who we are are tightly wound together.

When I choose to become vegetarian, I found myself desperately wanting foods from my childhood. When I was being tested for coeliac disease (which I turned out not to have) I found myself getting teary-eyed at the idea that each croissant I ate might be the last.
Sometimes we discover that Christmas just isn’t Christmas without a roast or that going to the pub with work colleagues doesn’t feel right any more after we’ve stopped drinking alcohol. Or that lovely seaside town you went to as a child just isn’t the same without the fish and chips but the idea of actually buying and eating fish now disgusts. Things we rely on change when we change what we eat and change can feel scary and overwhelming.

All that change, much of it unanticipated can be stressful.
Stress can also come in the form of other people’s reactions. Some people will unexpectedly take it personally that you no longer eat what you did. In rejecting the food they make for you or the cafe they eat at, you seem to be rejecting them and they react as if you have. I lost a boyfriend by becoming vegetarian – he expressed his feelings for me by making me food and now I was telling him I really didn’t want bacon on toast or pasta with bolognese and he couldn’t help but take it personally.
Others will feel like you are judging them if you make an ethical choice for yourself. Some may feel like you are rejecting their culture or religion or even that you are deliberately trying to upset them.

Even when you are not rebelling or rejecting anyone, dealing with other people’s fears and feelings on top of your own feelings and the difficulties of adjusting your diet in a world actively trying to convince you to eat things you no longer wish to consider food is understandably difficult and painful. And stressful as fuck.

One more way that changing what you consider food can have effects on your mental health is through hunger. Being hungry is unpleasant, sometimes even painful. Many people will associate feeling hungry with bad things from their past, times when they haven’t been cared for and have been unable to care for themselves. Times when there was no money for food. Times when things went wrong. Even if you don’t have those associations, being hungry for more than just a few minutes hurts. And hunger can be a regular occurrence in the first few months of a new eating style. Who knew the veggie pub closed on Mondays? Why did you pay the entry fee for the pie festival before making sure there’d be something you could eat? Your friend was adamant that she could and would make something you could eat at the party but you arrived late and it’s been eaten? Hunger happens. It’s distressing when it does.

For all these reasons, it’s important to make sure you take care of your mental health when changing what you eat. Any existing problems might become temporarily worse as your life changes in unexpected ways. Other people’s problems might try to become your problem (Captain Awkward has many good posts on this but this one is about food). You may fall into the cycle from the previous post.

The solution, mainly, is to be aware that these things might happen and watch yourself to make sure you’re as mentally healthy as you can be. Remember that changing what you eat is HARD WORK and it will get easier but it’s okay to cut yourself some slack. Be gentle and caring towards yourself, you’re doing something difficult.

Change is Hard, Give Yourself a Break

I’m vegetarian. I wasn’t always vegetarian.
I’ve been vegan. I am not currently vegan.

As someone who hangs around with enough veggies to occasionally forget that it isn’t massively strange that my girlfriend eats meat sometimes, I’ve seen quite a few people make a massive change in their diets for ethical and/or religious reasons. And I’ve seen a pattern that some people go through that I think is massively unhelpful for them.
It goes something like this: A person, let’s call them B, comes to some conclusions about their personal ethics and realises that eating certain foods and buying certain goods do not fit within their ethical system. So, B decides to make radical changes to their lifestyle – particularly their diet. Having decided to make such changes, B expects to be able to start straight away. They remove any remaining “unethical” foods from their living space and make one or two meals for themself with the remaining “allowed” foods. They feel great! They are really proud of themself for making the change and see themself as a good and wonderful person.
THEN something happens. B feels sad and wants bacon or ice cream. Or B goes to their favourite restaurant only to find they can no longer eat there. Or they rush into a sandwich store after class with a growling stomach and find nothing they can eat. B no longer feels like a good and wonderful person. They feel like a bad and terrible person for wanting the forbidden foods. They feel ashamed and upset.

LATER having got bored of the small number of “allowed” meals B knows how to make, B finds themself hungrily eating and even enjoying a forbidden food. They quickly feel guilty and conflicted. They wonder how they can be such an awful person as to want and enjoy food that has come about through suffering and pain. They feel like they have failed.
Over time, this cycle repeats, with B each time vowing to try harder. Eventually B will either succeed or give up on their new diet.

Is B you or someone you know? I have some words to have with the Bs of this world. Please, please give yourselves a break.

Seriously. Change, any change even the most desirable and wanted change, is hard. It is scary and difficult to make huge changes in our lives. It’s okay to take things slowly.

If you’re trying to go from omnivore to veggie, try cutting out particular meats first until you don’t eat meat and then try cutting out the gelatine and questioning whey powders and food colourings after that. If you’re moving from veggie to vegan, try cutting out eggs before cutting out pre-made things with egg in, find a milk substitute you like and can easily obtain before cutting out milk, try being vegan at home and veggie out of the house until you really know what you’re doing cooking-wise… In general, try to take things slowly and consider not taking something out of your diet until you’ve got something to replace it with. The replacement need not be a direct analogue – I’ve replaced the bacon-shaped hole in my diet with salty foods like crisps, with protein-y foods like chickpeas and with chilli, garlic and onion flavours. Simply cutting stuff out with no real plan on what you’re going to eat now is a recipe for stress.

But Ethics! I hear you cry. Yeah, I know. But surely *reducing* the amount of meat / dairy / non-organic / not free trade / etc food you eat will have some of the effect that ceasing to eat those foods altogether would have? That’s still something. Please remember that you’re living in a society/world which is actively trying to normalise the consumption of foods made from animals / made by exploiting people. You are surrounded by the foods you have decided to avoid and by people and companies whose job it is to entice you to eat them. Resisting isn’t futile but it is difficult, changing your diet to one that isn’t supported by the dominant cultures around you will be hard and cannot be done in a day. It might take months or even years to get yourself used to and able to manage the kind of diet you think you should follow. It will take time and effort and planning – not measuring your worth as a human being against what you eat. Using that metric you will initially always find yourself lacking and that’s just not good for you.

I know you’re doing this because you want to minimise suffering. I just ask of you to consider the suffering of one more animal: YOU. The stress of constantly measuring yourself against a perfect ideal of what you should eat and what you should *want* to eat will hurt you. You can’t go from one diet to a much more restricted one in one step without slipping up at least sometimes. Accept that you won’t do it perfectly straight away and stop beating yourself up when you do. You’re not a terrible person. You’re a human being trying to do something very difficult, trying to unlearn years of messages about what is and isn’t food. You’re only human and that’s okay.

To end: it doesn’t have to be all-or-nothing. If you want to, try to cut down on what animal products / otherwise unethical foods you eat. Maybe you’ll never quite get to vegan (I didn’t yet!) but trying is still something. Meat only occasionally is still something. Pizza in an otherwise dairy-free diet is still something.
Look after yourself, take things slowly if you need to. This is difficult but it gets easier. No one would begrudge you eating animal products if you had to for your physical health – let’s take your mental health just as seriously.

EDITED TO ADD: there’s now a follow-up post here