Yesterday I attended the symposium I spoke about in my last blog. It was really interesting and I left feeling pretty inspired about the future with new ideas and some contacts too.
What surprised me was that whilst I expected to leave with most ideas about working within this field, I actually found myself relating everything back to my own musicianship and how I can bring that forward.
Thanks to the many shitty experiences I've had with accessing any level of support I have a bit of a distorted relationship with assisted technology. I'm always questioning whether I should be using things, wondering if impairments will improve only if I resist the equipment long enough and just generally second guessing the validity of my own needs.
In terms of music stuff I'm starting to feel much more as if actually I should just look at the end goal and do all I can to reach it. It's odd how we internalise this sort of crap really.
I realised yesterday that in order to make it fully accessible for me to make my own music and perform and create it live in the way that I want to I'm going to need much more than my loop pedal and current instruments. I'll need software and macbook to run it, a means of accessing it and that's before considering as well as suitable seating/wheelchair and PA support to access venues. I also need to have a serious think about my own health and the amount that I can actually reasonably do. I need to learn to manage my own health better. The exacerbation of my illness just after yesterday goes to show how important this is.
I had a good chat with people from Drake music and am hoping to gain some support and insight from them about the way forward as well as hopefully using some of their macs!
One of the pieces of kit that I had previously discovered but thought of more as something to work with others using but not so much use myself was the 'skoog'. This is an instrument designed to be as accessible as possible to as many people as possible. It looks like a cube with 5 buttons but actually by means of physical modelling (don't ask me waht that means) allows you to do far more than access 5 notes. It's also very fast to programme new samples, notes or chords so would be ideal for use whilst playing live. I'll be honest in that I did find it difficult to coordinate at first but it really does seem to be the most accessible thing oiut there and I'm sure it will get easier. It would be far more accessible to me than a keyboard or moving fast between multiple instruments on stage. Sadly, as with most things it is quite expensive for an individual to buy.
The beauty of all of this software and kit is that I could then use it for work with community music projects and that whilst learning to use it myself I would not only be developing my own musicianship but developing my skills in this particular field.
So, now I need to think of ways of moving this forward and start making music again in the meantime.
www.skoogmusic.com
www.drakemusic.org
Showing posts with label adaptations. Show all posts
Showing posts with label adaptations. Show all posts
Sunday, 8 July 2012
Monday, 25 June 2012
The inaccessible nightmare that is visiting family
I meant to post this earlier but I got side tracked downloading apps on to my android phone. I've been looking in to various different apps that might make it easier to use the computer when I'm not so well as well as apps that make accessing musicianship easier. Definitely more on that at a later date!
Last week I visited my family in my home town for the first time in over 2 years. It was a far more positive experience than I'd originally anticipated over all. It was good to see family and friends even if I did only stay for two nights.
Still, there are quite a few things that just made it clear to me just how much my impairments have progressed. When I last visited I was only using 1 crutch. My mobility was impaired but it was more about fatigue. I managed the day ok, I just paid for it later. Now I use a powerchair pretty much full time. I didn't realise when I first started using a basic electric wheelchair nearly 2 years ago that my impairments would get much worse, not better. In all honesty, it's a bit sad really.
Trying to travel at all as a disabled person who relies on equipment and care is a bit of a nightmare. I used to travel quite a bit and visit friends houses regularly. It occurred to me whilst at my mothers house that in the last 18 months this was only the second time I'd been inside someone else's home. Now don't get me wrong, I do love my flat and enjoy having people over but I also miss just sitting with a cup of tea at someone elses, watching a flim, getting a takeaway and enjoying being in other people's company without being the host.
Looking at how inaccessible most people's places are, there's no wonder I don't just pop over for a cup of tea. Not only does it often take me twice as long to get across London as non powerchair users, getting in to the place when I get there is a nightmare. In order for me to get in to my mum's house, I had to use a make shift ramp (bricks and wood) and drive at an angle more suited to a ski jump than an expensive piece of kit.
Then there's the age old crip problem. Where the hell do I pee? Well, to be honest, on this occasion in to a disposable gel urinal in a cupboard under the stairs. Nothing beats shouting out "mum can you pass me my phone please?" "why?" "It's got a flashlight on it". See, I told you apps were useful :p Not everyone has a suitable cupboard and definitely not everyone would be happy for me to pee in it. I couldn't visit my brothers at all as it's 2 flights of stairs just to get to the front door :(
I had to stay in a hotel too which posed it's own problems. No profiling bed puts me at risk in an emergency as I cannot always move well enough to get out of bed independently. (thankfully when the alarm went off at 5am, I was so startled that I spasmed/jerked upright :P ) This also meant I need to give my mum a key and rely on her hanging around any time I needed to lie down.
The biggest problems in hotel rooms generally is the bathroom. Who on earth thinks a bath is accessible regardless of how many grab rails it has. I used this as an excuse to have a bath with lush products though. Although for future reference, getting in is easier than getting out! I had my mum to help + there was a ledge behind my back which made it vaguely possible to get out.
The last and most frustrating problem was the fact that my care is not portable. In other words I can't access it from anywhere other than my flat. If I didn't have support of friends and family there's no way I could have gone. I can't afford to (and shouldn't have to) pay someone out of my own pocket. Thankfully my mother is now more accepting of my impairments and was willing to help out.* Still, she shouldn't have had to take 3 days off work for the duration of my stay and come in to the town centre 2-3 times a day. I know I'm not a burden but I feel like one and it's just not fair when the support should be in place.
My plan to improve things for the future is:
- continue to fight for direct payments so that my care is portable
- continue to fight for higher DLA so that I can afford the additional costs associated with 2 travelling.
- Learn how to drive and get a wheelchair accessible vehicle
-taxicard (applied but where is it!?!)
Once those are sorted perhaps then I will have someone to help with these:
- portable ramp
- supportive manual wheelchair
- bath board/over bath shower chair
- suction grab rails (have but couldn't carry)
I really would like to visit people more often. Being in someone's home is so much less draining than loud restaurants and pubs not to mention cheaper.
*big thanks to travelodge and their massive towels for helping me preserve my modesty ;)
Last week I visited my family in my home town for the first time in over 2 years. It was a far more positive experience than I'd originally anticipated over all. It was good to see family and friends even if I did only stay for two nights.
Still, there are quite a few things that just made it clear to me just how much my impairments have progressed. When I last visited I was only using 1 crutch. My mobility was impaired but it was more about fatigue. I managed the day ok, I just paid for it later. Now I use a powerchair pretty much full time. I didn't realise when I first started using a basic electric wheelchair nearly 2 years ago that my impairments would get much worse, not better. In all honesty, it's a bit sad really.
Trying to travel at all as a disabled person who relies on equipment and care is a bit of a nightmare. I used to travel quite a bit and visit friends houses regularly. It occurred to me whilst at my mothers house that in the last 18 months this was only the second time I'd been inside someone else's home. Now don't get me wrong, I do love my flat and enjoy having people over but I also miss just sitting with a cup of tea at someone elses, watching a flim, getting a takeaway and enjoying being in other people's company without being the host.
Looking at how inaccessible most people's places are, there's no wonder I don't just pop over for a cup of tea. Not only does it often take me twice as long to get across London as non powerchair users, getting in to the place when I get there is a nightmare. In order for me to get in to my mum's house, I had to use a make shift ramp (bricks and wood) and drive at an angle more suited to a ski jump than an expensive piece of kit.
Then there's the age old crip problem. Where the hell do I pee? Well, to be honest, on this occasion in to a disposable gel urinal in a cupboard under the stairs. Nothing beats shouting out "mum can you pass me my phone please?" "why?" "It's got a flashlight on it". See, I told you apps were useful :p Not everyone has a suitable cupboard and definitely not everyone would be happy for me to pee in it. I couldn't visit my brothers at all as it's 2 flights of stairs just to get to the front door :(
I had to stay in a hotel too which posed it's own problems. No profiling bed puts me at risk in an emergency as I cannot always move well enough to get out of bed independently. (thankfully when the alarm went off at 5am, I was so startled that I spasmed/jerked upright :P ) This also meant I need to give my mum a key and rely on her hanging around any time I needed to lie down.
The biggest problems in hotel rooms generally is the bathroom. Who on earth thinks a bath is accessible regardless of how many grab rails it has. I used this as an excuse to have a bath with lush products though. Although for future reference, getting in is easier than getting out! I had my mum to help + there was a ledge behind my back which made it vaguely possible to get out.
The last and most frustrating problem was the fact that my care is not portable. In other words I can't access it from anywhere other than my flat. If I didn't have support of friends and family there's no way I could have gone. I can't afford to (and shouldn't have to) pay someone out of my own pocket. Thankfully my mother is now more accepting of my impairments and was willing to help out.* Still, she shouldn't have had to take 3 days off work for the duration of my stay and come in to the town centre 2-3 times a day. I know I'm not a burden but I feel like one and it's just not fair when the support should be in place.
My plan to improve things for the future is:
- continue to fight for direct payments so that my care is portable
- continue to fight for higher DLA so that I can afford the additional costs associated with 2 travelling.
- Learn how to drive and get a wheelchair accessible vehicle
-taxicard (applied but where is it!?!)
Once those are sorted perhaps then I will have someone to help with these:
- portable ramp
- supportive manual wheelchair
- bath board/over bath shower chair
- suction grab rails (have but couldn't carry)
I really would like to visit people more often. Being in someone's home is so much less draining than loud restaurants and pubs not to mention cheaper.
*big thanks to travelodge and their massive towels for helping me preserve my modesty ;)
Saturday, 19 May 2012
A noobs guide to potential equipment/adaptations part 2: food/cooking
Food!
Food is one of those annoying things that you can't do without but can take a huge amount of physical and mental resources to prepare. Chopping veg, opening packages, lifting pans can all be difficult or impossible if you have a physical impairment and mental health issues or fatigue can make the task of cooking a well balanced meal seem insurmountable.
Unfortunately, most of us don't get the help we need. Even those of us lucky (?) enough to qualify for care provision may find ourselves with such a small time frame for food preparation that our food choices become extremely limited. Here are a few things that I've found invaluable in my quest to eat as healthily as time and physical limitations will allow.
Firstly, meet my three friends.
Say hello to 1) George foreman
"Hello" (what? It looks like a mouth!)
2) The slow cooker
and 3) Microwave
And on to....
6) Quorn fillets
I'm a vegetarian but as these are low in fat, high in protein only around £2 a bag, I think they have their benefits for meat eaters too! Put them in the George Foreman grill with a little lemon juice and ginger or add pasta sauce afterwards. I sometimes just eat these first 3 items together as a meal when time is short. Well worth checking out the rest of the range too.
7) Beans, grains and pulses
10 food products this crip loves
Most of these products should be available in any bigger supermarket. Shop online!
Reach for store's plain, own brand. Comes in steam bags that you just put in the microwave. Watch out for the flavoured frozen and cupboard (e.g uncle bens) rice mixes as they are more likely to contain additives.
This comes in little pellets which you microwave. It sounds a bit gross but it's really alright. Great for satisfying a craving but not particularly healthy!
Great for adding a portion of veg to a meal. Shove straight in microwave. Also available in store's own brand.
4) Frozen preprepared vegetables
Again, these are available fresh but they tend to not be so good value. Most shops seem to have them but sainsburys and Ocado seem to be best. You can get individual veggies e.g butternut squash, spinach, broccoli, onion; but also casserole mixes, mushroom medleys, Mediterranean grilled veg and my favourite - the frozen stir fry mix You can also get frozen garlic and herbs.
4) Frozen preprepared vegetables
Again, these are available fresh but they tend to not be so good value. Most shops seem to have them but sainsburys and Ocado seem to be best. You can get individual veggies e.g butternut squash, spinach, broccoli, onion; but also casserole mixes, mushroom medleys, Mediterranean grilled veg and my favourite - the frozen stir fry mix You can also get frozen garlic and herbs.
5) Aunt bessie's frozen Finely chopped veg
Gets a special mention because it's so versatile. Add it in to curries, bolognese or just an omelette. Veggies with little work. Particularly useful if you don't actually like vegetables that much.
6) Quorn fillets
I'm a vegetarian but as these are low in fat, high in protein only around £2 a bag, I think they have their benefits for meat eaters too! Put them in the George Foreman grill with a little lemon juice and ginger or add pasta sauce afterwards. I sometimes just eat these first 3 items together as a meal when time is short. Well worth checking out the rest of the range too.
7) Beans, grains and pulses
Pour a tin or two of these, some frozen veg and sauce in to a slow cooker and you're away! Some are cheaper to buy in bags but be sure that you get ones that don't need soaking first
Personally I always have the following:
Tinned:
Tinned:
Butter beans
Kidney Beans
Cannellini beans
Borlotti beans
Borlotti beans
Chick peas
Bagged:
Green (puy) lentils
Orange (dahl) lentils
Pinto beans
Bulgar Wheat
Quinoa
Pearl Barley
8) Chilli beans (KTC are the cheapest but best brand in my opinion)
These get a special mention as they add so much flavour to casseroles. Try using them as a base for slow cooked chilli or make a basic sausage and bean casserole with:
1 tin chopped tomatoes
These get a special mention as they add so much flavour to casseroles. Try using them as a base for slow cooked chilli or make a basic sausage and bean casserole with:
1 tin chopped tomatoes
1 tin chilli beans
handful of green lentils
handful of pearl barley
handful finely chopped veg
1 pack linda mcartney veggie sausages
Cook on low for around 6 hours and eat by itself or with rice.
9) Tinned tomatoes
Most people use these but did you know that you can get pre seasoned tins? Great for getting a quick meal that actually tastes of something.
Most people use these but did you know that you can get pre seasoned tins? Great for getting a quick meal that actually tastes of something.
Comes in a sachet which you then use to measure the milk out with. Lots of flavours available. Also works with soya/almond/rice milk etc
That's it for now folks but I hope this is of use to someone! Am hoping the links do work too! I'll probably post some of my own recipes at some point too.
Sunday, 22 April 2012
A noobs guide to potential equipment/adaptations - part 1
I was talking to someone the other day about how there's a prevailing attitude within parts of the chronic illness community of cure over adaptation. This seems to be quite prevalent in those illnesses for which campaigning centres around 'cure' and/or those where 'recovery' is the socially expected outcome. Don't get me wrong, I'd really like to get better but I'm trying to be realistic here.
I've spent a long while feeling guilty about adapting my life rather than aiming to 'get better'. In reality my illness was very much progressive up to a point and now I can't tell if the progression has stopped, or just slowed down. Either way, guilt does not help me with anything.
So...I thought instead of talking about how bad I feel and *insert internalised ablism here* etc etc, I thought I'd talk about some of the awesome adaptations I've made which have changed my life. I think this blog would be way too long if I included everything so I'll attempt to make this in to a mini series of some sort.
I'd like to point out that I am both very lucky and very crafty in terms of the equipment and adaptations that I have. Many of the items I own would not usually be prescribed for someone with my impairments. However, that's not to say that they are not needed. I wish it was much easier for others to gain the things they need. However, as I said, I've also been quite crafty in terms of getting equipment so hopefully some of you may get some ideas on obtaining things.
I've spent a long while feeling guilty about adapting my life rather than aiming to 'get better'. In reality my illness was very much progressive up to a point and now I can't tell if the progression has stopped, or just slowed down. Either way, guilt does not help me with anything.
So...I thought instead of talking about how bad I feel and *insert internalised ablism here* etc etc, I thought I'd talk about some of the awesome adaptations I've made which have changed my life. I think this blog would be way too long if I included everything so I'll attempt to make this in to a mini series of some sort.
I'd like to point out that I am both very lucky and very crafty in terms of the equipment and adaptations that I have. Many of the items I own would not usually be prescribed for someone with my impairments. However, that's not to say that they are not needed. I wish it was much easier for others to gain the things they need. However, as I said, I've also been quite crafty in terms of getting equipment so hopefully some of you may get some ideas on obtaining things.
Adjustable bed
Note: stock photo: I don't have granny carpet
This was one of those items that I initially felt very uncomfortable about having but that made such a massive difference to my life that I felt silly for ever doubting it once I started using it! (This happens a lot!)
What is it: An electronically adjustable double bed with massage function. I use my own ikea memory foam mattress on top instead of that supplied.
How it helps:
What is it: An electronically adjustable double bed with massage function. I use my own ikea memory foam mattress on top instead of that supplied.
How it helps:
- Sitting up from a lying down position is either impossible or very very difficult for me so this helps me sit up and means I can get out of bed with minimal to no assistance unless very ill.
- One of my impairments is what I like to call the 'upside down woodlouse'. In layman's terms: once I'm on my back it's often very difficult to change position. Being able to adjust the legs and back means I don't get uncomfortable lying in the same position.
Why I like it
- One of my impairments is what I like to call the 'upside down woodlouse'. In layman's terms: once I'm on my back it's often very difficult to change position. Being able to adjust the legs and back means I don't get uncomfortable lying in the same position.
Why I like it
- I like the fact it's a double. I can take advantage of being a single adult and take up way too much space/duvet.
- It doesn't look like a hospital bed. It's designed for crips and lazy people alike.
- I spend a lot of time in bed and it's nice not having to lie completely flat to get the benefits of being in bed.
- It doesn't look like a hospital bed. It's designed for crips and lazy people alike.
- I spend a lot of time in bed and it's nice not having to lie completely flat to get the benefits of being in bed.
- It's really freaking comfy.
Disadvantages
Disadvantages
- It's a bit old and creaky.
- Anyone in bed with me needs to put up with whatever bizarre position I need to be in.
- Unlike hospital beds you can't adjust the height of the bed which makes changing clothes/pads from a lying position more physically demanding for a PA/carer/nurse.
- The massage function is more like a giant, loud vibrator.
- Anyone in bed with me needs to put up with whatever bizarre position I need to be in.
- Unlike hospital beds you can't adjust the height of the bed which makes changing clothes/pads from a lying position more physically demanding for a PA/carer/nurse.
- The massage function is more like a giant, loud vibrator.
How I got it:
- The community OT prescribed me a pillow lifter to help me sit up in bed but I found it far too uncomfortable. Instead she converted this to a 'direct payment'. This meant I was given money to buy something which fitted under the (intentionally broad) description of "a piece of equipment to rise from lying to sitting in bed". A bit of crafty ebaying and I had myself a double adjustable bed costing less than the direct payment.
- The community OT prescribed me a pillow lifter to help me sit up in bed but I found it far too uncomfortable. Instead she converted this to a 'direct payment'. This meant I was given money to buy something which fitted under the (intentionally broad) description of "a piece of equipment to rise from lying to sitting in bed". A bit of crafty ebaying and I had myself a double adjustable bed costing less than the direct payment.
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