DIY SOS

In the past week, I have had multiple visits to my house by tradesmen regarding DIY, some scheduled while others were unexpected....you might be reading this thinking "what's the big deal? we all need DIY done in our house at one point or another" and you'd be right. However, when you have a disability having DIY completed brings with it many complexities and anxieties that non-disabled people wouldn't even think about because they didn't have to.

Last Tuesday morning brought with it a 6am start. Due to working from home and not being out and about for work I hadn't seen a 6 am start for a while, since the pandemic began but it was what was required to ensure that I had enough time to get up and organised in the morning with support before the workmen arrived. All this had to be arranged ahead of time because my support provider, although pretty flexible have to know these things so they can incorporate it into their weekly rota's. The early start was required because my bathroom floor was being replaced which is major work in anyone's house as the bathroom is one of the key rooms in a house for obvious reasons but for me it was an even bigger job due to my disability and support needs.

So this led to the next big question, how and where was I going to use the toilet? again you might be reading this and thinking "can you not just nip into your neighbours or family members and ask to use their toilet"? In the pandemic no, as house visits are banned but for me whether it had been before the pandemic or now the answer would still be no. This will never be an option for me as I have to use a stand-aid to transfer to and from the toilet. I can't use public toilets as although my stand-aid is portable, it's not portable enough to come with me everywhere I go. If I am really honest, prior to the pandemic anyone who knows or works with me would back me up and say I have a bladder like a camel. I could go out all day and not use the toilet as long as I had used the toilet before I left my house. It was like a switch in my head, I would be fine when I was out and about but as soon as the front wheels of my wheelchair was over my front door I'd need to go to the toilet. However, I shouldn't and couldn't guarantee that I would be able to do this while my bathroom floor was being replaced.

I have a stand-aid at home at my own house and at my dads for when I visit him as well as one in my office space. However, with current restrictions it is not as simple as just going to visit my dad or accessing my office space. So with the help of the local Provost it was arranged for me to go in to my office space for the day to enable me to use the toilet. Making these arrangements weren't easy though. I had to be very blunt with some council bosses to get them to agree to allow me access to my office space. If I am honest I think I embarrassed them with my bluntness of highlighting if they didn't grant me access to allow me to use my stand-aid I wouldn't be able to use the toilet and in -turn I wouldn't be able to have this much needed work done in my house. I am sometimes blunt without even realising at the time that I shouldn't need to be. It is often in reflection that I think, I shouldn't need to tell a council boss that I don't even know that without this assistance I wouldn't be able to use the toilet which is a Human Right for anyone but it is almost as if when you have a disability you have to justify things that others take for granted.....how is that right?

As it turns out, the work was completed that day but took a lot longer than expected and after returning home from my office space that evening, I had to wait another 5 hours before I was able to use my toilet. Due to this my support had to be unexpectedly extended and it was a good job the bladder like a camel was able to kick in!! I can't really fault the workmen though. They were only doing their job and they did offer to organise for the toilet to be put back in to allow me to use it and then take it back out again to finish the work but that would have just prolonged things all the more. A colleague asked me what other disabled people who needs their bathrooms repaired would do if they could not access their toilet as I must not be the only disabled person who ever needed work done on their bathroom. I again, was very blunt and advised that it is likely that the person would be told they would have to use a commode or wear a pad, where is the dignity in this?? this is why I have a challenging relationship with my local authority as I don't just accept these things and instead, challenge them. However, there are other people who don't or can't challenge what there advised and just accept what they are told.

As if this wasn't challenging enough to have my bathroom floor replaced, my automatic front door failed on Saturday. This wouldn't be a big deal if I had another way out...but I don't. For those of you that know me or have read my previous blogs you will know that I have challenged the council on several occasions but have been advised that it is only their policy to adapt one side of a property . I require the use of an automatic door as I am unable to use the key due to my disability. My door has failed on more than one occasion now, falling off the ceiling at one point which would have been fatal if I had been underneath it. In this instance it took 5 day's for the door to be repaired as no one would take responsibility for what had happened, again it was only when I enlisted the support of my local Provost that my door was fixed. I should not have to enlist the support of my local elected members as often as I do but the reality is that this is what it seems I have to do to get a response form the council. Ideally I would love for the council just to say "no problem Danielle, we will sort that"

When my door failed at the weekend, I was on my own at home for 6 hours before it was repaired. To be fair this was the first time that the council actually knew who to contact to repair it once I actually got someone to listen to what I was saying. The first person i spoke to couldn't understand that I had an automatic door and couldn't open it manually due to my disability or that I don't have 24/7 support or any other way out. Eventually I spoke to someone called Kaitlyn, and she listened and credit where credit is due she organised for it to be repaired by the company who installed the door. My anxieties were through the roof though just the prospect of being at home and not being able to open my door if there was a fire. My support provider were unable to put in additional support until my door got fixed and one of my support workers thought it was reassuring to tell me that I would be fine. I quickly pointed out that she couldn't guarantee that... how did she know that there wouldn't be a fire?. It didn't need to be in here, it could happen in the flat upstairs and I wouldn't have nay way out. Once I pointed this out she stopped trying to reassure me because she couldn't. I didn't do anything on Saturday except try and listen to music while waiting on the door to be repaired but by the time the engineer came and repaired the door, I was shattered, physically and mentally drained. I think it was just the stress of the door needing repaired and of me having no way out, should something have happened.

My door has a key safe with a key inside should anyone need to open the door manually, there is also a keypad with a code that can be used for people to get in. It is only my dad and staff who support me regularly who have this but because I couldn't open the door manually myself from inside I had to give it to the engineer to allow him to get in to repair the door. Would you give 20 strangers a key to your house? I think the answer would be no! but yet this is what I had to do to enable my door to be repaired. I have since highlighted with the council that the door needs to be serviced regularly and the keycode changed because I am not happy with the fact I had to give my keycode to a stranger.

Prior to the pandemic the council wouldn't adapt my backdoor but ironically gave me permissions to do it myself. However, in order for this to happen I need to raise £25,000. This is a substantial amount of money to raise even without living through a pandemic so obviously all that is on hold. Last month I published a blog entitled "Home sweet home" where I shared my journey to get to this point of living in my house. This is my home and I fought to get it I just need my backdoor adapted to allow me the same access as others would take for granted.... it looks like this will be a continuing battle once Covid-19 allows.