How I Became Disabled & How DLA Helps Me

This is a very hard post for me to write, but I think it is important to explain how disability often creeps up on you.  Most of us don't get hit by a bus and end up a wheelchair, we start having symptoms of disease that take a long time to develop and get diagnosed.  We often spend years of uncertainty and trying different medications, fearing that we are becoming more and more dependent upon our loved ones.  There is very rarely a day or even a month that you can point at and say "this is when I became disabled" and acknowledging that you are disabled is a very hard step to take.  This is why it takes people so long to even consider applying for Disability Living Allowance or a Blue Badge, or even buying a walking stick or wheelchair.

Eleven years ago I felt that I was finally getting my life on track after spending a year and a half learning how to enjoy being single.  I had an interesting new job that was challenging me and I had just met the man who is now my partner.  I was taking part in amateur dramatics which meant rehearsing two-three nights a week and I was working a couple of nights a week in a pub to help pay off some debts I had accrued during my split with my ex.   I was on the go constantly and had a tiring but fulfilling life.

Within six months everything changed.  I had become pregnant and it wasn't a normal pregnancy, it was an ectopic pregnancy.  After several weeks of going back and forth from the hospital almost daily to have blood tests done they decided to operate and they removed the pregnancy and one of my fallopian tubes.  After the surgery I was off from work for 6 weeks and then was told to only go back to work part time.  My new employer had been reasonably patient but my work hadn't really been tackled in my absence so I didn't really go back to work part-time, despite my resolve to not overdo it.

Instead of getting better over time I seemed to be getting worse.  I was having incredibly painful periods that caused agony for around 2 weeks out of every 4.  I was struggling with my work load and I began to sink into depression.  In the end, my employer asked me to leave as they couldn't afford to have me there only every 2-3 weeks out of 4 and to have me struggling so much when previously I had motored through the work and been extremely competent.  They had hired one woman and ended up with a 1/3rd of one, within 8 months.

Within 2 years I had been diagnosed with endometriosis and treatments were started.  I also got counselling and I thought things were looking up.  The pain was becoming less after about the third different set of treatments and I was feeling much more together.  I was starting to feel like I could possibly start looking for work again once I had built up my stamina.  I was doing well on this front when I suffered a ruptured appendix.  It knocked me for six.  The wound got infected and I became quite ill.  It took months to recover from this surgery.  Just as I thought things were getting back on track I started to experience extremely bad pain.  Worse than I had experienced before, in my abdomen.  I eventually had a laparoscopy to discover that I was suffering from adhesions, which are straps of scar tissue that stick to your internal organs and often pull them out of shape. 

I was scheduled for another key hole procedure in a few months to remove the adhesions.  Within 6 months the adhesions had grown enormously and the surgeon ended up taking 5 hours to remove all the scar tissue that had wrapped itself around my insides.  I felt so much better within a few weeks of this surgery because my insides were all untangled.  I still experienced high levels of pain which were due to the damage that had been done over the years to my nerve tissue through operations and constant pressure of adheisons and endometrial cysts.  I was told that this pain was never likely to go away.

Despite the unravelling of my insides, I couldn't sit upright for longer than 20 minutes without feeling sick with the pain, so going out was a very rare occurrence that required much planning and reconnaissance on my behalf.  I certainly couldn't stand up, unaided, for longer than about 10 minutes without my legs giving way because of the pain.  It wasn't unknown for me to lay on the floor during social occasions because I couldn't do anything else to ease the pain.

It was at this point that I decided that I needed help.  I decided to apply for DLA, mainly so I could have a Blue Badge.  I was really unable to walk very far without collapsing in pain.  I was fighting the use of a wheelchair but eventually decided that I needed one for when I went anywhere for longer than an hour or so.

I applied to DLA and was rejected.  I decided to appeal because I knew in my heart that I was eligible for DLA and was surprised that I was rejected.  I had read that I stood a much greater chance of winning my appeal if I attended the tribunal.  I turned up to the tribunal and I was asked questions and I won my appeal.

As I had to wait 6 months for the appeal to be processed I had a substantial back payment which I used to buy a second hand mobility scooter.  This became my best ever purchase.  I could get around my local vicinity without having to get help.  I became independent again.  I decided that I needed to learn to drive and used most of my DLA to learn to drive an automatic car because I couldn't manage the clutch on a manual.  I learnt to drive within 6 months and I then got a car on Motability which completely transformed my life.  I could pop to the shops.  I could take a short trip to a friend's house, I could even drive myself to see my family 90 miles away.

Within a year though, I had to give up my car because my pain had increased to such levels I had to increase my pain killers to very high dose.  I didn't feel safe driving with that amount of drugs in my system, to be honest I didn't feel safe sitting still with those level of drugs in me.  I've mainly got used to those drugs now and have even added different pain killers to the mix.

I've had another batch of adhesions removed since then and I've had to give up more and more of my social activities.

I have also had to reapply for DLA twice since my first application.  I get it awarded for 2 years each time, as I have what is considered a variably condition, though as far as I can see it has only varied by getting worse.  The second application I made was also rejected and then appealed successfully.  My third application actually went through first time.  I was stunned at not having to appeal because I had got so used to having to jump through many many hoops to get what I was entitled to.

I totally rely on receiving my DLA now.  As I am unable to drive because of my drug intake, I use my DLA to pay for taxis.  Taxis are my sole method of independent transport.  I always have to have at least £20 in my purse so if I get stuck anywhere I can ring for a taxi to get me home.  In order to get to a hospital appointment it can cost me around £15-£20 to get there and back depending on traffic, and the same if I need to go into town to buy anything.

My scooter has been replaced since my original purchase because the old one blew up.  It is so scary being stranded in the middle of nowhere with a broken down scooter.  Thank heavens for the kindness of strangers.  So my DLA also pays for parts replacements and repairing punctures.

I have a rollator now, rather than a stick which helps keep me walking.  It cost £175.  I can sit down and rest when there is no other seating available, for example between the door of the hospital and the clinic.  My wheelchair is no good for when I'm on my own as I am unable to propel myself.  I have a step for getting into the bath (£40) and seat for sitting down while I shower (£30).  I have a heat pad (£45) which I can plug into the wall when I'm at home and the heat helps with the pain.  When I am away from home I use adhesive heat pads but they are not renewable so I can get through quite a lot.  They cost approximately £4.00 for a pack of 3.  I have to pay £10.40 a month for my pre-pay prescription but I'm not allowed to use it to buy paracetamol or lactulose, both of which I need.  DLA helps pay for these costs.

DLA helps me have some degree of independence.  I don't have to ask my partner to make sure I have food in the house before he leaves for work, because I can go to the local shop on my scooter.  I don't have to ask people to give me lifts if they want to see me because I can get a taxi to them.  I can get in and out of the bath without asking my partner to help me, because I have a step with a hand rail. 

Without DLA I would be trapped in my home.  I would have my scooter until it got a puncture and then I wouldn't be able to afford to pay the £45 to have it repaired.  I would slowly and surely sink into depression again as I faced spending all my time alone except when my partner came home.  It would put enormous pressure on my partner, who already shoulders the costs of running our home and does all the chores around the house.  He would have the sole responsibility of cheering me up.  I don't think he would be able to do that for long without becoming depressed himself.

It is a hard and lonely business being disabled, not to mention expensive. DLA enables me to feel that I am able to join in with my friends and family to a degree that I wouldn't be able, were it not to exist.

38Degrees Emails

Well I just got a shock.  I decided, because I was a bit bored to be honest, to have a look at my stats for this teeny tiny blog.  I was gobsmacked because one post got over 500 hits.  It was this post about my emails to 38Degrees.  I simply couldn't understand why one of my blog posts could possibly get that many hits because this is a new blog and have hardly any followers.  So I decided to look on the traffic source part of stats and I discovered this post that had created most of my traffic.

I'm on the Guardian website - ME!!!  My partner called me, and I quote, "a proper grass root activist".  Not that it seems to have done any good.  I didn't hear back from 38Degrees so I decided to send my email again through their contact form on their website.  Here is their reply.

Hi Chrissy,


Thanks for getting in touch.  

Don't worry, it's no problem at all that you're not able to make a donation at the moment. The team has no expectation that everyone will donate but do need to ask for donations so that 38 Degrees can keep on campaigning. 

Thanks for being involved, 

Cian & the 38 Degrees team

Erm, I don't think they got the point, do you?  I was so angry at this reply that I have ignored it. It has sat in my in box since before Christmas angering me every time I saw it. 

I got another email from them a week or so ago asking for my support so I clicked on unsubscribe and when the box popped up asking why I was unsubscribing I ranted.  I ranted big style and I forgot to keep a copy.  I wish I had kept it because it was worthy of being kept if only to marvel at how much anger can be put into an email.

I am disgusted with 38Degrees and their attitude.  They have provided no assistance to the sick and disabled campaigners who are nearly killing themselves to get the word out to the public about what is being done to their benefit system. 

I have to wonder if now the Spartacus Report has gained publicity and the campaign has helped achieve some change in the Welfare Reform Bill via the House of Lords votes, 38Degress will climb on board and claim any further victories.  They do seem to like the populist causes rather than the ones that will require them to really push and challenge the public.

I would love to know if anyone else emailed 38Degrees in a similar vein and what, if any, reply they received.  Am I the only person who was fobbed off in this manner, or do they really not care about this issue?

Welfare Reform Defeat for the Government in the Lords

Yesterday was a interesting day for me.  It was the day that the House of Lords was voting on amendments to the Welfare Reform Bill.  I decided that I had to know what was happening, as it happened, so I watched via Parliament TV, the live debate.  You can read the transcripts of the debate here, the debate started at 3.44pm.

Watching the Lords do their work yesterday was illuminating.  When we get letters from the DWP or see news reports, telling us things are changing, we always think of it as a "done deal".  We learn about the changes after they have happened.  This was the first time I think I've been aware of changes while they are happening, and been part of a process of fighting those changes.

I have to confess, that I found out things during the debate that I hadn't previously understood.  Here, Lord Patel opens his speech with a clarification of how his amendment would change things:

My Lords, I shall speak also to Amendments 38A and 39A. These amendments oppose the introduction of a 12-month limit on the amount of time in which those in the work-related activity group, or WRAG, are able to claim contributory employment and support allowance, or ESA.

I had been worrying about my own loss of benefits after 12 months, which I did not need to do as I have now been placed in the Support Group.  The Support Group, does not have a time limiting factor on it, under the new legislation. 

This was an enormous relief for me personally, but does not change how important, at the very least, extending the time limit for people who are told they are fit to perform some work related activity.  The thought of becoming blind or losing a limb and being told that I am fit for some sort of work and being told to find work and learn how to adapt to my changed circumstances, at the same time, fills me with horror.  When the Government is busy telling us that these people won't be left without financial support, they are stretching the the truth somewhat.  In my eyes £7,500, which is the maximum your partner or parent is allowed to earn before aid is removed, is not really enough to live on, even if you are fit and healthy. 

The amendment relating to the time limiting factor of ESA is:

Amendment 38: Proposed by LORD PATEL & LORD MCKENZIE OF LUTON

Page 36, line 34, leave out “365 days” and insert “a prescribed number of days which must be at least 730”

Lord Patel was very eloquent and moving in his speech. Many fellow peers waded in, supporting him and demolishing the objections.  It really moved me to see these men and women fighting the House of Commons on matters of how the worst off in the UK get treated.  I think the comment by Lord Strasburger summed it up best for me:

My Lords, I fully support the Government's efforts to address the huge deficit which they inherited. However, my noble friend the Minister needs to explain why I should support this attempt to penalise some of the most vulnerable and disadvantaged people in our society for the greed of the financial services industry and the incompetence of the regulators. Do these sick and disabled people have the broadest shoulders, which we keep hearing about, to carry the burden of the cuts?

These peers actually understand the the details of how this Bill is going to affect the sick and the disabled people who have to live with the consequences of this debate.  Many peers quoted from letters they had received or articles they had read relating to individuals and how this would affect them.  I really felt like these peers cared enough to work hard to discover what would be the right thing to do, rather than the political thing to do.

The results of all the hard work and convincing debate were 234 Contents and 186 Not Contents.  Basically this means that 234 were "Content" to proceed with the amendment and 186 were "Not Content".  This means that it takes out of the Bill that 12 months is the limit for receiving ESA in the WRAG.  It means that the phrase "not less than 730 days" is put in instead.  This means that the lowest time limit can be 2 years and that should the Government (whoever was in power) choose, they could take away that limit altogether without rewriting legislation.

I was stunned to see that the Lords agreed with me, that people who are declared fit for work, should be given enough time to adjust to their changed circumstances before support is withdrawn.  I still believe that having an arbitrary limit on finding work if you are sick or disabled is wrong.  I will continue to believe it is wrong until all employers actually look at a candidate without looking at their physical or mental challenges and only look at their skills and qualifications.  The day this happens, is the day when a time limit should be applied to ESA for people in the WRAG.

I really hope that yesterday's loud statements from the Lords is actually heard by the Government, but I sincerely doubt it.  I can live in hope though, because one thing this whole campaign has taught me is that anything is possible.