Paul's #DLA Story & #PIP Fears

In all the political posturing and chest beating there has been a lot of talk about Disability Living Allowance. Most of it’s ill informed and often misleading. Cabinet members who should know better keep referring to it as a benefit for unemployed disabled people and how it’s rife with fraud (actually 0.5%, much lower that DWP’s own error rate). What DLA actually is, is a benefit that goes some way to covering the additional costs of being disabled and can be claimed, working or not. For a lot of disabled people, DLA is the thing that actually enables them to work. The planned 20% cut when it migrates to Personal Independence Payments (PIP) will mean significant numbers of disabled people losing out and, in some cases, having to give up work. An exceptionally retrogressive step.

I get DLA. I get the middle rate care and higher rate mobility. These help me cope with the additional costs of being disabled and help keep me able to work.

This is quite hard for me to write as it’s going to contain some very personal information. That’s why it’s not written in my real name as I’m not ‘out’ about everything here.

I was born with Spina Bifida, a disability caused by the spine and spinal cord failing to form properly before birth. I’m ‘lucky’, my spinal damage is relatively low down and I didn’t get Hydrocephalous which is a common condition with SB. Despite that, I’m fairly disabled and had to endure a significant amount of surgery to keep me functioning. Forty surgeries in 44 years. One of those operations was to amputate my left leg below the knee due to damage caused as a result of the reduced sensation that SB causes.

So that’s the damage, now for the effects:

·         Walking: I can walk after a fashion but it’s painful, tiring, gets me out of breath and it’s almost impossible to carry anything. Only being able to walk a short distance means I can’t walk to the bus stop or the corner shop. I can do it if I really try, the same way an able bodied person can do a marathon but, like a marathon runner I couldn’t do it two – three times a day every day. Getting the higher rate DLA means I qualify for Motability, a scheme where I give up my mobility component as the payments on a lease for a car. This means I have safe, reliable, accessible transport so I cna get to work, go shopping and even socialise like any non-disabled person. This isn’t about choice, preferring the car over public transport. This is about being able to make the journeys I need to in order to live a ‘normal’ working, productive life. It also means I qualify for a blue badge for parking. For me this is twofold. Firstly it means I can park nearer to my destination, reducing the walking. Secondly, because of my prosthesis I need to be able to open the car door fully to get out. The wider disabled spaces mean I can do that. Sometimes when people have parked too close (but within ‘normal’ parking distances) I’ve had to trust a stranger to move my car enough so I can get in. These are just the problems when I can wear my prosthesis. When I can’t I have to use crutches and things become much much harder. I also have appalling balance and trip and fall frequently.

·         Standing: The same issues that affect my walking also affect my ability to stand. The imbalance in my hips, differing leg length and spinal curve mean that standing gets painful within a minute or two. This makes waiting for public transport excruciating.

·         Damage: One of the lesser known ‘hazards’ of disability is the damage it does to your clothes. The upper edge of my prosthesis wears my trousers through at the knee in three to four months. The limited flexibility of the heel destroys socks and the insoles of shoes. If I don’t get my trousers altered to allow for the differing leg length then the prosthesis heel destroys the hem too. My gait (Trendelneburg for those interested) means I flex shoes to breaking point, scrub the soles as I walk, and catch the toe as I can’t lift my foot as I swing through. This means I get through shoes far faster than someone without my gait.

·         Continence: The big one, something I keep private and try to cover up all the time. The level of damage to my spinal cord left me doubly incontinent. As a result, I had to have a colostomy when I was 7 and an artificial bladder sphincter when I was 25. Two massive operations that damaged my stomach muscles.

When it works, the colostomy is fine. However it’s not always reliable and you never know when it will leak. As a result I have to take a change of clothes, a wash kit and spare bags with me almost everywhere I go. As I said above, carrying stuff is really difficult. This is where the car helps as I can leave this in the car most of the time. It’s normally fairly close to where I am and I can get the bag and sort things out easily. Should I lose my car I’d have to:

o   wait for a bus,

o   get on it without having been able to clean myself up and endure the stares and comments of other passengers,

o   walk home still reeking and in extreme discomfort,

o   get changed,

o   walk back to the bus stop,

o   wait for the bus,

o   Finally arrive back at work.

Assuming a not unusual 30 minute commute, this could take between 1 ½ to 3 hours depending on timing and bus frequency. It also assumes I don’t get thrown off the bus. Having my car means being able to sort things out in 15 to 20 minutes maximum. It means I can go to work knowing I’ll be able to put in a full day.

While the bladder sphincter gives me improved urinary continence, it’s only about 70-80% effective. Coughing, sneezing, lifting and laughing all make it fail. As a result I wear a leg bag. Like the colostomy, this can and does leak. These failures are unpredictable and usually involve a change of clothes. As above, the support the DLA gives me enables me to live a more productive life.

These leaks can happen at home too, often in bed which means trying to strip the bed in the middle of the night and ending up sleeping on a towel as I can’t make the bed again. If I bag laundry up and drag it, I can get it in the machine but hanging it out, bringing it in; folding/ironing it is extremely hard work due to my balance and standing problems. If I’m unable to wear my prosthesis (which happens fairly often) then this is effectively impossible. I pay someone to help me with this and remake the bed or I’d not get it done. As you don’t want soiled clothes hanging around I also do far more loads in the machine than average which costs more and also shortens the life of the clothes. Yet more disability specific cost.

·           Energy: All of the above takes an estimated 150% of the energy it would take a non disabled person. I can cook from scratch but don’t always have the energy/balance to do so safely so I have a stock of ready meals. These are more expensive than using raw ingredients which is my preference when I don’t have to preserve my energy for going to work.

This is just a taste of the key issues in my life and the stuff I have to manage to keep as functional and productive as possible. The support that DLA and associated services provide are cornerstones of enabling me to work. If the proposed PIP test goes through unchanged, there’s a chance I’d lose it all. This would severely hamper my ability to work, exactly the opposite of the Government’s stated aim.

There’s also been a lot of talk about disabled people being awarded DLA for life and how there should be regular medicals to check if they are getting better. My award was for life as SB doesn’t get better. It only gets worse as your body ages and the wonky spine and uneven muscles take more and more toll on your joints. This was before I became an amputee. Now, there’s even less chance of me getting ‘better’ as, as far as I know, there’s no record of limbs regenerating in humans. The politicians argue that reassessing me would tell me I’ve not been dumped on a shelf and been told there’s things I can’t do. I know that anyway. I work, I’ve studied, I’m involved with my community. I do what I can within my limitations and DLA is one of the things that enables that.

Those making policy have a slim grip on the reality of the issues involved and they took a cavalier approach to the consultation on the changes proposed. They ignored all the responses from disabled people’s organisations and only took a cursory look at responses from individuals. The DPO’s responses were measured, evidence and experience based. We know the system isn’t perfect, we know it needs some reform, but it needs to be reasonable, evidence based and not set the lives of disabled people back 30 years or more.

This has been a hard post to write and I’m sure I’ve forgotten issues that I just get on with everyday that take longer or cost me more. When you see someone talking about PIP or DLA, remember it’s not just about the obvious impairments. It’s about the hidden ones and all the knock on issues that all these impairments bring.