Unrecognised Mental Health
Unrecognised Mental Health
There are many dark times when you have a degenerative condition, many times when you can feel utterly alone even though you are held in the arms of your loving family. When your condition is combined with pain, discomfort, muscle cramps and sleeplessness, the hours of night can be full of emotional turmoil, self-condemnation and silent screams in one’s head of, “Why me?!”. The pounding your ego and belief in self-worth gets on a daily basis when you factor in the lack of dignity one gets with care, as one’s needs for support for all aspects of your Activities of Daily Living increases. It is an insidious, creeping increase of assistance to fulfil your needs, this being the acceptable term for meeting the most intimate of your hygiene needs that I refuse to describe in any detail here. But it is the darkness that is the worst, the feeling that no one really understands, it’s so personal to you, how could anyone understand. People see the physical disability, one’s once upright strong, broad shouldered figure now bent, coward by pain, twisted by the advancing condition as nerves are crushed, discs shatter, and penalised by confinement to a wheelchair. It is the reality that one is trapped within a body decaying around your mind, decaying one’s optimism and personality with it, trapped forever in a wheelchair until one day it all ends. But this isn’t the full extent of it, nowhere near it, as one is trapped inside the body, confined to a wheelchair, trapped inside a house, restricted to a reachable community, unable to go anywhere without someone with you, like a child needing to be kept safe as they cross the road.
One does not want to think about how bad it gets, but when it is with you 24/7 it will always seep silently into your thoughts, corrupting you mind, defaming your character and achievements. One tries to work but as each day that passes it seems to get a little bit harder, as does finding the reason to get out of bed in the morning, or should that be helped to get out of bed, helped to do almost everything in the morning that I am sure most of you would take for granted. I am acutely aware of people looking at me when I go out; they can’t help but stare I guess, especially children being as curious as ever. But this isn’t helped by parents yanking their children away saying “you mustn’t stare”, which without realising turns a child’s natural curiosity about someone being in a wheelchair, being different, into a negative and something to be cautious about, as if we wheelchair users were some sort of predator. When one thinks about it this is more about the parent’s embarrassment as the child hasn’t done anything wrong other than to be inquisitive and it is the parents over reaction that makes it a negative experience. It could be an opportunity for someone like me to actually say to the child that “I am in a wheelchair because I can’t walk, I hurt my back”, making the staring in pure inquisitiveness a positive. But no the parent effectively chastises the child and takes them away with a swift yank of an arm like some expert CIA rendition snatch squad. This type experience occurs nearly every time when I am out and it deflates me so badly, this just makes me want to hide at home, close the curtains, not answer the phone or doorbell, but even so I am very lucky. I will explain how later.
I wanted to write this blog because across twitter there has been so much talk about making mental health more acceptable, to talk about it more, make it a point of conversation, address the misperceptions and this ridiculous stigma, for pity’s sake 1 in 3 people will have mental health problems in their life at some point. But to me there is a real issue around mental health and disability which is practically ignored and as I have just shared with you one really can find yourself in the depths of utter despair, often hidden away, locked away from those that love you. I cannot comment for people born with a disability, I just don’t feel qualified to speak on this subject as I acquired my disability, easily the worst acquisition of my life!!! Over time I have become more and more trapped inside this body and less and less able to deal with the emotional consequences. Without doubt it has and will continue to be the biggest challenge of my life, to find a way of living with what is happening to me and the knock on effects to my family. Because there are three significant points:
- There is no escaping the disability, it is with you 24/7, 1440 minutes every day;
- That there is a massive impact on one’s own mental health;
- That there is a massive impact the people around you;
This is what worries me; there is support and help for the physical elements of disability:
Continuance & Skin Integrity Services
GP’s & a whole host of Consultants
(By the way all of the above have been significantly cut back, and the threshold of need to access such services has steadily increased so that only the very poorest of physical disability can now gain their support, putting 100,000’s at risk)
But the support for the psychological impact of disability, constant pain, the indignity and emotional toll on self from the various aspects of living with a disability, is very hard to get. There is more and more support for people at work and awareness raising but try and find a counsellor who understands the effects of disability, or get a referral to ‘Talking Therapies’ as they are called nowadays, and you can expect to wait between 6 & 12 months if not more. In many cases I am aware of people who haven’t even got on a waiting list, as again the services have been cut so dramatically that unless they triage you and deem you a risk of immediate harm to self or others, you may not even get on the list. Even in these circumstances I am aware of one area in the North East where the waiting list for the most severe cases needing to see a Psychologist is currently 18 months! Even within these services there is a complete lack of understanding about what is going on in relation to mental health and the disabled person, they simply don’t get the pressures we face or that our families face dealing with these conditions every minute of the day. All too often you are met with, “It’s a matter of adjustment” or “You have to come to terms with it”. If I am told once more it is about adjustment I am going to adjust their face!
It isn’t anything to do with adjustment, it is the understanding of the psychological effects of pure draining energy it takes to get out of bed, to face society, to access our communities and the workplace, often in circumstances where people do not have a clue about ‘reasonable adjustments’ let alone the Social Model of Disability. So often we are left to deal with the stresses and strains alone, which just adds to the negative spiral down into depression that many will face at one time or another. I am certainly aware that there is a higher rate of suicide amongst disabled people, higher rate of depression, and these rates have absolutely sky-rocketed over the past few years. Yes the blasted Coalition has:
- Cut essential services to disabled people;
- Victimised & demonised disabled people as scroungers or parasites;
- Put us through the most degrading and humiliating assessments;
- Reduced disabled people to begging in some cases;
- Taken many of the support they need to live, eat, stay warm;
- Forced some into using food banks in order not to starve;
- Declared 100,000’s fit for work when they clearly are not;
- Made disabled people pay for bedrooms often used by carers;
- Stopped & removed different funds set up to support those in most need, ILF (Independent Living Fund) for example;
And generally put disabled people under enormous pressure & stress by changing every benefit set up to support them and their family, re-assessing every person with a disability, even though many are effectively terminally ill, with an open agenda reducing the amount of claimants. In some cases, following the humiliation that was an ATOS re-assessment people felt so violated that they took their own lives. The waiting list to assess new claimants is so long now that some with terminal illnesses are actually dying before they are assessed. What a unique way the Coalition have found to save money, just letting them die before they qualify for any entitlements under the new benefits regime.
So being disabled is not a bunch of roses at the moment and made all the harder by this Coalition with their lack of services to support the mental health side of disability. There is some significantly positive work going on that is leading to reducing the stigma of mental health problems in the workplace and in the community, such as (Twitter addresses):
But I would suggest these are general focussed, rightly so, but I think there needs to be:
- Dedicated research into how extensive the problem is relating to mental health and physical disability – it may seem obvious that of course there’s a link, reactive in nature but without evidence of the extent, cause & effect, how are disabled people supposed to put pressure on the Government to deliver the right pathway, the right services;
- Support for the family carers of people with disability, often through the host of assessments one goes through not once does anyone ask about the needs of the family unit, their support needs;
- Better education about disabilities in school and support for a more inclusive society;
- The Coalition stopping the negativity they direct at people with disabilities as this directly leads to hate crimes, abuse, stigma and demonization, which just adds to further mental health issues and much worse;
For me I have found tremendous strength from my wife (my angel) and my family, when it all feels too difficult to continue fighting, as that’s what it is every single day, they keep me going, shining light into the darkness that you can find yourself in. I am extremely lucking to have them in my life, extremely grateful for their love and support, I appreciate all they do every day & I am very careful never ever to take them for granted.
Yours most sincerely
Smiling Cat Ventures (www.smilingcatventures.org)
Innovative Minds @ Work (www.innovativemindsatwork.org)
Mind the Step (improving accessibility)
Able Politics (increasing disabled peoples engagement in politics)
Face Book: Disability in Business
Linked-In: Jonathan Wade (Innovative Minds at Work)