The ramblings of a 20-something disabled, queer, feminist, Irish kitty

Archive for the ‘Disability’ Category

Low FODMAP Root Vegetable Mash

This is another recipe that I have modified and adapted. The original recipe was for ‘bangers and mash’, which I found on the NHS Change 4 Life website, which stubbornly refuses to let me link to it! That recipe called only for the veg and potatoes, but this does not produce a particularly nice consistency, so I have added the Lactofree milk (cow’s milk with the lactose removed), and Pure sunflower oil spread (this is the only butter substitute that I have found that is both lactose and soya free, and therefore low FODMAP). I usually use butternut squash for this recipe, as it is often all that is available in store.
Again, this meal will count for 2 of your ‘Five a Day’, as well as a full serving of carbohydrates, so all you need to add is some kind of meat or meat substitute to make it an officially ‘balanced’ meal (it is NHS approved after all). This means that it can be a great way of getting vegetables into people who don’t like them, especially if you serve with gravy.

I have included instructions for the ‘low spoon’** method of cooking squash and other equally tough vegetables. For many spoonies who tire easily, have weak wrists, etc. it can be difficult to chop veg, and ones like squash are particularly resistant. Using the microwave instead softens the veg before chopping. You can choose to microwave it until it is completely cooked, or only do it part-way until it is soft enough to work with, and then you can throw it into the boiling water with the rest of the vegetables.

Serves: 3 to 4

Ingredients:
300g or 4 medium carrots
700g potatoes
300g swede, turnip, or butternut squash
1 knob Pure sunflower oil spread
A dash of Lactofree semi-skimmed milk

Cooking Time: 25 minutes approximately

Calories: 330 approximately

Method:
1. Peel the potatoes and carrots, and then chop into thin slices, or dice, and put in a large saucepan.
2. Cover in boiling water and boil for approximately 20 minutes, until soft.
3. If you are using butternut squash, chop it approximately in half, and weigh, to ensure you have cut off the correct quantity. As swedes and turnips are smaller, you will hopefully not have to cut them at all.
4. Pierce the skin of the squash* and microwave on full for approximately 15 minutes (if your microwave has preset functions you can enter the weight and use a vegetable setting).
5. Once the squash is cooked, remove from the microwave to cool.
6. Once cool enough, you can peel the squash using a sharp knife, stabilising it with a fork. (At this point it will still be too hot to handle).
7. Dice the squash and put into a large mixing bowl.
8. Drain the potatoes and carrots and put into the same bowl.
9. Put a knob of Pure spread, and a dash of milk into the bowl, and mash until you achieve the desired consistency.
10. Serve with gluten-free sausages, or as an accompaniment to any other high protein item (meat or meat-substitute).

*or swede or similar (I will henceforth be using ‘squash’ as a catch-all term for ease

**see The Spoon Theory if you don’t know what a spoonie is

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Low FODMAP Egg Bacon Pasta Salad Recipe

This is a recipe that I have modified and added to over the years, and now adapted to use only low FODMAP ingredients. If you are not following a low FODMAP or similar diet, then you can use regular pasta and any type of bell pepper. The original recipe also included spring onions, which I have removed as they are a high FODMAP food.
I usually make this meal for 2, but it scales up and down very well, so I have listed the amounts for 1. Multiply as needed.
This isn’t the healthiest meal in my arsenal, but so long as you choose the least fatty bacon you can, and opt for light mayo, it’s really not too bad, and with all that veg should count for at least two of your ‘five a day’.

Serves 1

Ingredients:
75g or 2 to 2.5 handfuls of gluten free pasta
1 medium egg
2 strips of back bacon
1/2 bell pepper (any colour except green)
3 to 4 radishes
45g mixed salad leaves
1 dessert spoon light mayonnaise

Cooking time: 15 to 20 minutes

Calories: 240 calories (approx)

Method:
1. Put 1 medium egg in a small saucepan and boil for 15 minutes.
2. Once the egg has started to boil, put the pasta into a large saucepan and bring to the boil. Boil for 10 minutes.
3. As soon as the pasta has been turned on, start grilling 2 rashers of bacon, turning once. Make sure that they do not end up too crispy, as they will not mix well with the rest of the salad if they are. These should take approximately the same length of time as the pasta.
4. In the meantime, dice the bell pepper and radishes, and tear or chop the salad leaves. (Personally I use a mixed bag of baby spinach, baby red chard, and wild rocket)
5. Once cooked, peel and chop the egg, and chop the bacon.
6. Mix everything in a large bowl with approximately 1 level dessert spoon of light mayonnaise.
7. Serve and season to taste (I find it’s best with some black pepper)

Disablism, Ageism, and Living with Invisible Illnesses

When people look at me they see a healthy, young, 20-something woman. They see someone in the prime of their life. They see someone who should be fit and full of energy. They see someone who should be able to run up a flight of stairs, or queue with everyone else.

You know what? I’d love to be able to run up that flight of stairs. I’d love to be able to walk around an entire museum without falling over. I’d love to be able to stand in a queue for an hour. But I can’t. Maybe, on a good day, if there was a fire I could run up that flight of stairs. On a bad day, I could drag myself up it as fast as my body would allow. But I have a finite amount of energy, and doing so would use up my entire allowance for that day.

I do believe that the disablism I suffer is worsened by my age. I have had middle-aged people demand to know why I am using the lift, when I look fit as a fiddle and should be able to run rings around them. I have had shop assistants laugh at me as I try to use the crappy lift in their store. I have had doctors reaching retirement tell me I am too young to be on as many medications as I am. Medications that other doctors have prescribed! I have had old ladies stare at me as I take out my walking stick. I have had people stare as I sit down in one of the disabled seats on the bus. I have had people scowl as I have taken out my radar key to use the accessible toilet because the queue to the ladies is too long.
The problem is that all of those people cannot see the constant pain in my joints and muscles. They cannot see the raging infections. They cannot see the fatigue. They cannot see that if I were to queue for more than a couple of minutes unsupported my legs would simply buckle under me. And they cannot see the guilt, the anxiety, the depression, the paranoia that rages inside my mind. Every time I use an accessible facility I feel guilty. I worry about using a service that someone else might need more. Of course, if someone in more need than me came along I would give up my seat on the bus. I am not the monster that strangers seem to think I am.

People look at me and they see someone who should be in work. I dread going back and having to field a million questions as to why I could not work for months. People look at me and they do not see the crippling depression. They do not see the terror that befalls me at the prospect of making a phone call. They do not see the frightened girl who is scared of strangers. They do not see someone who needs assistance to fill out a simple form. They do not see the mind that is plagued with flashbacks.

People look at me and they cannot understand why I cannot be impulsive. One of the things that I hate most about my illness is having to ration my energy. I have a finite amount of spoons, less than your average non-disabled person. To make matters worse, the amount of spoons I have can vary wildly from day to day. So when I want to do something fun, whether it’s go to the zoo or museum, or go to a weekend long convention, or even go to the pub for an hour, I have to stop and consider how many spoons I have available. My partner and I have adapted to this by being as organised as possible, and planning our days as best we can. Where possible, we try to have contingency plans in place as well. This may sound dull. This may make people think I am boring. But it is actually to ensure that I get as much enjoyment out of my day as possible. By finding out in advance how accessible a venue is, by planning in advance an alternate activity should the first plan turn out to be too strenuous, we ensure that no matter how I am feeling that day we try to make the most of it. People judge me for not being impulsive, for not liking surprises, for getting annoyed when people change our plans at the last minute. But it is because they have no idea what it is like to have to ration one’s spoons. They do not understand the worry that comes from having to gauge whether doing this activity will use up all my spoons for the next 2 days and prevent me from going to work the next day. People may think I am a spoilsport, but this is me trying to have fun.

Don’t get me wrong. I am not saying that people with visible illnesses have it easy, or do not experience disablism. I am simply trying to describe the special brand of prejudice that is levelled at someone like me, someone who is a young adult with invisible illnesses and disabilities.

On so-called benefit scroungers, and what it’s really like to be disabled

The more my health declines, the more disabled I become, the more angry I get at this attitude that all cripples are just fakers, sponging off the government because they’re too lazy to work.
I think two things made it really hit home recently… I decided to read the guidelines for the Equality Act 2010, so that I would know, once and for all if I’m ‘technically disabled’. For years I’ve struggled, when filling out forms, with whether or not to tick the box that says I’m disabled. So I read the entirety of the guidelines, and what qualifies you to be officially disabled.
The main thing the guidelines highlighted was that it has nothing to do with whether or not you have a diagnosis, whether or not the doctors or government or society have given you the blue badge of approval. It depends entirely on how your symptoms affect your day-to-day life.
Reading through the document, and it’s various examples of how an illness can affect your life, and your ability to carry out simple tasks, it struck me that pretty much every disabled person you see is *more disabled than they look*. Whether you’re disabled from birth, injured in an accident, or slowly crippled by a degenerative illness, ALL disabled people learn to compensate. Human beings are extremely adaptive, as well as having the instinct to automatically try and conform and fit in with others. So as soon as one has some kind of ‘impairment’, one automatically starts to compensate, to try their hardest to fit into the mould that is ‘normality’. All the little ways we learn to compensate, whether it’s by always opting to take the lift instead of climb the stairs, casually ask someone to pass you something instead of bending or reaching, or whatever other little tricks you learn to fake ‘normality’, to fake still being able-bodied like everybody else…
This means that, by faking it as much as your body will allow, by trying to blend in and not attract attention to the things you cannot do, you always hide at least a portion of your disability. Some ‘problems’ are easier to conceal than others, of course… As soon as you stop being able to walk, as soon as you need a wheelchair, you get ‘officially’ branded as disabled. But even when you need a wheelchair, or lose the ability to see or hear, or any of the other things most people take for granted, you start compensating, doing whatever it takes to seem as ‘normal’ as humanly possible.
I’m not even going to get into how fucked up this is, this instinct to try and confirm, to assimilate yourself as best you can into the picture of what others deem a person should be…
Instead I want to draw your attention to the effect this might have on people who claim benefits. Not to mention those who are too scared or ashamed to even apply for benefits, lest they be branded a ‘scrounger’. Go on, think about it… That’s right. It means that every single disabled person is more deserving of whatever benefits they can possibly apply for than you think they are. A fun fact from the Equality Act is that, when deciding if you’re a cripple or not, one has to take into account what you would be like without any medical treatment you might be using, whether that’s a little pill you take each day, or a weekly therapy session, or anything else. ‘They’ (whoever ‘they’ are) have to stop and think about what you would and would not be able to do without any medical intervention, assuming you would still be alive at all.

And the second thing that made me stop and think about this? Having to write down an entire list of all my own symptoms to bring to the doctor, and a list of all the little ways I’ve learnt to compensate for my problems. You actually forget how weird and unusual all these little things are, these little tricks for coping with life and pretending to still be ‘normal’. It actually often even takes an able-bodied person to come along, and get close to you, close enough to see the ways you compensate, and to point them out to you, for YOU to realise how much your life has changed, never mind someone on the outside looking in.

So that person you see walking down the street, who smiles and nods just like everyone else, but who dares to claim benefits… Well how dare you judge them? Maybe they have an inhaler hidden in their pocket, maybe they have a little pill they take each night before bed, maybe they even have a wheelchair at home for days when they do struggle to walk. YOU DON’T KNOW. So unless you are a medical professional, who knows this persons entire medical history, don’t you fucking dare make assumptions about whether or not they are disabled, or whether or not they ‘deserve’ benefits. Because you don’t know the first fucking thing about them or what their life is like. And I can pretty much promise you that we don’t sit around wondering if able bodied people really deserve that job or promotion or shiny car they just got, or even the other benefits they might be on. Because we know that it’s none of our goddamn business, and we know how horrible it is to be constantly judged and treated like second class citizens because of something we cannot even control.

So next time someone bitches about ‘benefit scroungers’, whether it’s a colleague or neighbour or politician or the media… Just stop and think what the chances are that this person knows the full story, and whether or not this person is really in the position to make that judgement.