Joan - Living Independently

Joan has Spinal Muscular Atrophy Type 2, and at the age of 42 chose to live independently. You can read her story below which first appeared in the Winter 2010 edition of our ‘Inspirations’ magazine. You also watch this video clip to find out how she's getting on in 2016:

It was almost Christmas and I was enjoying ‘faffing’ (as my friend Katrina calls it) in my `new house’. Doing what I want, when I want…great! I can’t believe it has really happened and looking back, how I feel I have changed. 

I have SMA Type 2, I’m forty two and have just left mum and dad. Yes - ridiculous, but I had a great life living with my parents and although many of my friends have been living ‘independently’ for years, I never really wanted to do it. Probably, looking back, I was bit too apprehensive and worried too much about not feeling comfortable with other PAs -­ I`m a very fussy so-and-so and felt only my mum could do it ‘right`. 

But then a suitable flat became vacant with my local housing association, just around the corner from my parents and I thought ‘I`m not going to get anything more suitable so let’s have a look’. Strange, but it`s exactly the same house as my mum and dad`s. Over the years of casually looking into accessible housing I soon discovered that there isn’t a lot out there, and when you did find it there was such a long waiting list. My house is with Glasgow Housing Association and as they don’t have wheelchair accessible houses, it had to be a 4-in-a-block, 3 bedroom lower flat, which I have now discovered is great for space. 

I remember the first day I went to see it and I was horrified - it was filthy, hadn’t been decorated in almost 20 years; just disgusting. After I got lifted up the 2 steps (no ramp to start with obviously), I then had to try and see past the dirt and smells and could see lots of potential. I knew that it could be adapted, but I also knew it was going to be a big ‘project’. I think for a long time that’s what I`d seen it as,­ a project!! I was probably a bit too frightened to take that final step. But then I just start getting into it and one thing led to another, then problems developed, but somehow I just went with the flow and got on with it.

I had so many problems with direct payments and services and that I started to get angry with them. Perhaps I was just unlucky, but I felt there was a `take it or leave it` attitude, which is sad as they should be the very ones to push you forward into an independent life. Thankfully I had many friends with great knowledge of living independently, so I knew what I am entitled to, which was a big bonus. That made me fight even harder and I became more determined to win. Also, Glasgow Centre for Inclusive Living were fantastic -­ a wealth of knowledge!

My occupational therapist was keen for me to get all the adaptations I required -­ wet room, adapted kitchen, ramp, lowered light switches, intercom and ceiling hoists in both bathroom and bedroom. My housing association were also great and I had the added advantage of working with City Building (the contractor for Glasgow Housing) so I could plan closely with them in adapting many things specifically for me, which was important. Everyone has individual needs, not all wheelchair users are the same, so it`s important that you work closely with all tradesmen to work everything out before it actually gets done. I probably drove them all mad, but in the end it was worth it for me to have freedom when on my own. Now that I am actually living in my house, I realise even more just how important it is to share the experiences - both to pass on to anyone else who might be gaining their own independence and to help with any changes I might make in the future.

I used to have nightmares about using a hoist!! Absolutely hated the look of them and never wanted anyone to see it -­ my mum lifted all my life but I knew my new PAs couldn’t be expected to do this and it’s illegal. But would you believe that I now love my hoists? They’re so easy to work (I use the control button and my PAs guide me) and I couldn’t care less who sees it. In fact I don’t think anyone even notices it. Strangely enough, when my mum lifts me the ‘old way’ it now hurts my arms and shoulders, which is weird after all those years. I would say start with hoists when you are a young child, even if you are easy to lift, and then it`s not so traumatic when you do have to use them.

I`ve been extremely lucky and I’ve found great PAs, which has made things a lot easier. I’m glad I wasn’t persuaded to go along with council domestic care. By fighting for direct payments I now have total control over my staff and the hours they work. I had to make my own advert, do my own interviewing and, along with consultation with GCIL, had to decide on my own requirements/conditions so that I am always the one in control. I did have an initial problem with my contribution towards my care (which was far too high - I would have struggled to live had I paid the amount they wanted me to). This delayed things and I had to go to my local councillor, who was brilliant - within a week it had all been sorted out. I now get my direct payments, I pay my contribution and get it topped up by The Independent Living Fund, who I must also say are very supportive. Getting everything sorted was crazy and I was working full time too. Thankfully my employer was great and allowed me some time away to do interviews, etc. 

It all started to take shape and then it became scary!  I think for the 6 months that I had the house before I moved in I had seen it as `that project` for someone else, but on the day I realised this was it!! But, hey, I did it and its fantastic! I did sit on my own from time to time and had a good old cry, which was strange as I`d look around my house with all my nice new things and love it, but it still felt as if it wasn’t me. However, I soon got over that and to be honest, realised there isn’t time to sit around blubbing, I have far too many things to do. I now love cooking and trying out new things. It’s great having friends around and also just pottering around doing things at my own pace, when I want to do them.

So now I manage my own care plan, pay my own staff and it all works out really well. But also rest assured that places such as inclusive living centres (which are throughout the country) are there with vast amounts of experience in this area. They are very supportive and can do your payroll if you want.

I do miss my mum and dad but see them most days. I really miss my two Great Danes who live with mum and dad, but try to ensure I see them also on a daily basis. My parents are great and are always there for me. I could never have done all this without them ­ they have always given me independence but make me well aware that they are there for me, which means everything. They have probably made me the strong person that I am. Moving out is something I should have done many years ago - now we are all settled, both mum and dad know they don’t need to worry about me and they can see my staff are great (in only 9 months I`ve already had staff leave and a few new ones start, but you just adapt -­ you have to) and that things always work themselves out. They have more freedom now and as the years go on, it’s also less pressure for them to know they don’t need to worry about me if things change in their lives.

So now it`s well into a New Year and I feel I have a new life now which I love. My advice would be, please don’t ever feel pressured into living independently, but again don’t dismiss it. It does give you so much freedom because you are in control. It is frightening (or maybe that’s just me) but you soon adjust to things. I don’t know anyone fussier than me, so trust me anyone can do it!!