Some companies portray themselves as having a social conscience - usually by explaining how 'green' is the power that the company uses. There is another angle to being a socially beneficial company, that of supporting disabled people - part of society's forgotten population. That category is split into two more categories: physical disability and mental disability. I will concentrate on the psychiatric side of things, outlining a typical process of treatment, and then explore a few of the ways socially aware companies can give their support.
Initially this article focussed on the use of people with psychiatric problems in software houses. Upon consideration this article could be applied to people within the I.T. industry and beyond.
People start off being patients, staying on a psychiatric ward some time, with some activities run by the staff. After being patients, people are called 'clients' or 'service users' when they get moved out of the hospital and into the community.
Most of my information about mental health is based on first hand experience and by being acquainted with other patients. There are NHS sponsored 'gatherings' where NHS staff meet patients to learn from their experiences. See the references section at the end of this article for additional sources of information.
Official psychiatric articles usually have a high level of statistics and are kept hidden behind paywalls on the internet. For the purposes of this article I have drawn on personal experience and shown my key worker draft copies of this article.
Physical disability is something I haven't personally experienced. However, most buildings may need a ramp for wheelchair access and the provision of stair lifts for the physically disabled. If you're missing an arm or a leg then most people in that situation get by OK. Contact (see References at the end) provides stair lifts for people to use. It is a 'visible' illness and people find it easier to relate to.
Mental disability is something I have and continue to have experience of. There is an escalating scale of illness ranging from anxiety or depression all the way up to manic depression (now known as bipolar disorder) and schizophrenia. These tend to be 'invisible' illnesses and some people find it harder to relate to.
If mental ill-health bestowed only disadvantages to the sufferer and their social group, diseases like bipolar disorder and schizophrenia would have disappeared by now. It has been said that schizophrenics are divided into two separate camps - either those that can barely tie their shoe laces together and those that are brilliant thinkers. I know of one person - RC - who has bipolar disorder yet he held down a high-flying career in commerce and is very good with poetry. I have been given anecdotal evidence that a family with autism had a flair for maths [Times] at a University level of education. I have also read that Richard M. Stallman, founder of the Free Software Foundation suffers from Asperger's syndrome (which in turn is linked to autism).
My name's Ian [Bruntlett] and I have schizophrenia. I experience negative symptoms and positive symptoms.[NHS] [Wikipedia] Positive symptoms include hallucinations (auditory mainly, sometimes visual), thought disorder, delusions and cognitive impairment. Negative symptoms include withdrawal from social activities, emotional flatness, social apathy.
After nearly a decade of treatment courtesy of the NHS - and with a fair amount of therapy - you usually build up some idea of what is real and what is suspect. A foundation of getting to grips with schizophrenia is the NHS care in the community programme, implemented by a Community Assertive Outreach Team (CAOT), with social activities (e.g. walking group) to prevent the kind of social exclusion that people experience.
Psychosis vs reality
When I was first admitted onto a hospital ward, I was psychotic - I had lost track of reality. The lack of stimuli was a positive aspect of the ward while I struggled with hearing voices and delusions. It took three months to get me stable and onto medication. After that I was allocated a CPN (Community Psychiatric Nurse) and a Social Worker and discharged back into my own flat in the community.
A variety of approaches were taken to draw me gently back to reality. I agreed to speak to student psychiatrists about my experiences. I had regular conversations with staff (a senior nurse, key workers). The medication helped but the key factor was the NHS staff.
The NHS have a variety of strategies that are used to help patients. One key strategy is 'distraction' from voices, visions and disturbing thoughts. My main key worker on rehab (then East Loan), 'CC', helped me by talking about my strange beliefs, voices in my head and paranoia by introducing me to a variety of 'distraction' categories. We created an emergency credit card for use when going out into the community. It stated that I had a mental health problem, and provided emergency phone numbers. On the other side it listed the following 'coping strategies':
- Ground self in present (consciously keeping a tight hold of reality).
- Think of consequences of actions.
- Try reading a book.
- Watch T.V.
- If on a bus, look out of a window, move seats.
- Phone staff.
- Breathing exercises (to regain a sense of calm).
- Remember all achievements, positive things that have happened.
- Use PRN medication - supplementary medication taken when required.
Cognitive impairment is such an innocent phrase. Sometimes you lose track of a conversation. Sometimes it takes seemingly forever to understand something as simple as a water bill. Sometimes things that took a day (reading a paperback novel) now takes a lot longer (3 months, at its worst, now down to 3 or 4 days). Coping with an illness like schizophrenia is a full time occupation and this can lead to existing skills getting a bit rusty and missing out on more modern developments. So how does cognitive impairment start?
One cause of cognitive impairment is staying on an NHS psychiatric ward itself, for say... eight months solid. They provide a calm, stress free and low stimulus environment. Most people just sit around drinking NHS tea, chatting, watching TV or listening to the radio - instead of working on projects, communicating via emails and reading books.
There is no such thing as 'keeping busy' on a ward. With the help of a T.I. (Technical Instructor), I was allowed to access the internet using the Occupational Therapy department's patient access computer. I was able to keep track of news by reading The Register, to keep in touch with friends using a Hotmail account, and reading the messages on the accu-general mailing list. I did try to run a table top RPG on the ward - Call of Cthulhu - but the would-be players were moved to another unit because they were caught smoking cannabis.
Another cause of cognitive impairment is medication. Medications usually have some very nasty side effects. Mine - clozaril - can attack white blood cells which means I have regular blood tests to check that this is not happening. Typical medication can also lead to weight gain (eventually resulting in diabetes), lethargy and poor concentration. Supplementary medication can also have side effects. I took some - diazepam - and it made me so tired I just had to sit down and wait for the effects to dissipate.
A final cause is moving onto a specialist rehabilitation unit. Rehab is not just for drug users and has a variety of workers - Project Workers, Technical Instructors, Occupational Therapists, Mental Health Nurses, Psychologists and Psychiatrists. With their help the patients are prepared for life outside of the hospital. This is where things start getting better. Patients live on the hospital grounds in a small clustered community of single person flats. Patients have their week structured in the form of a weekly planner - various activities are arranged (food shopping, travelling to and from voluntary work). There is a strategy called graded exposure which is applied to many things but one instance in particular relates to how patients move from living on a hospital ward to living in the community. First you go home for a few hours with a member of staff once a week, then you go there alone for a few hours, then you go for a day or two and eventually you are moved out of rehab and into the community.
Once a patient has been stabilised and the right medications worked out, attention focuses on either going onto a longer stay unit followed by being moved into the community or going straight out into the community.
For a long time (at least a century), the NHS and the charities that preceded it have encouraged its stable psychiatric patients to engage in some activity - usually voluntary work. There are several reasons why the NHS encourages its patients to engage in these kinds of activities because an evidence based approach has shown it to be therapeutic and it has been observed that sitting around all day is bad for physical health - some form of activity is helpful. There used to be a farm on the hospital's grounds but that has long since gone.[StGeorge's] These days patients work at garden centres, in the Kiff Kaff (the hospital's café) or (in my case) in Contact's computer project. Salary is a matter of a few pounds a day or, in my case, a bacon sandwich a day. And patients benefit by experiencing the discipline of working and, perhaps, gaining skills like cooking or gardening. After a period of time, the patients also experience the satisfaction of doing something useful with their lives, having something tangible to account for their time.
The only cognitive exercise I experienced in the hospital was the weekly ward quiz. The Occupational Therapy department works towards preparing the patient for life in the community with skills - there are are Technical Instructors (T.I.s) and Occupational Therapists (O.T.s). Some of the skills I gained were travelling on buses in South East Northumberland, cooking, coping with crowds, finding a role (typically as a volunteer) and generally building a life outside of the hospital environment - all things that improve personal independence. Intellectual skills aren't a high priority in the NHS. Getting people stable, on the right medication and with the right amount of in the community support is a high priority.
For example, Contact, where I work as a volunteer , is a mental health charity based in Morpeth, Northumberland. [Contact] It was established in 1986 and it offers support and social contact for all its members. It has a computer project with two volunteers (me and Michael N) between the two of us we do all sorts of things. We provide front line support - looking after the PCs being used in the admin part of Contact, helping members of staff when a PC starts behaving in an unexpected manner, or tuition - helping members with computer issues - advice and guidance and help, dealing with infrastructure installation & maintenance issues (networks, phones, printers) installed and maintained by Michael N.
Lots of places have a free software policy. We (Contact) have a free hardware and free software philosophy - we take in unwanted PCs, fix and refurbish them and give them away to people with mental health problems, their carers or their children. As part of our philosophy we provide people with PCs with a selection of free/open source software. [STK]
As a volunteer, the work I do in Contact gives me similar benefits to the benefits other patients experience when working in the Kiff Kaff. It involves me with other people - good for preventing social withdrawal. It is also good for my morale to 'keep my hand in', making use of my degree in I.T. There are challenges - Contact's I.T. structure is balkanised. We have a variety of PCs with a variety of Windows and Linux versions. Officially the Crafts & Internet room is meant to be Windows based but Michael N and I are reluctant to move back to Windows - so we're using Ubuntu Linux in the Internet room and it works OK for us. Tristan S runs the Kiff Kaff computers at the hospital and patients are always installing junk on his (Windows) PCs.
My work in Contact gives me cognitive challenges that other volunteer jobs don't give. When dealing with a newly donated computer, I have to work out why it was donated - was it too old, was it faulty, do we have a Windows licence for it? Some stuff gets broken down into parts to be used to fix other PCs. Some stuff is given to IM from the Tyneside Linux User Group for his various personal projects.
One of the hardest things is tracking down intermittent faults. I had a donated PC that booted nicely into Windows XP, had a reasonable amount of RAM with an AMD Athlon CPU. So I tried booting an Ubuntu 10.4 CDR and it failed. The screen just didn't look right. I downloaded copies of both memtest86 and memtest86+ and booted from both of them. At just over 10% complete, the screen display would become corrupted. Delving into the box revealed that the video card was wobbling a bit. So I dug out a spare video card, booted up and checked it out - it ran full memtests with no problems.
Another problem is that while I prefer to use Linux at home, I have to deal with a variety of Windows versions in Contact. So I sometimes have to fall back on the knowledge I picked up working on the WIN32 port of the LiBRiS search engine. If that doesn't work and checking for help via mailing lists (Tyneside LUG, accu-general) or Google doesn't work, I contact Michael N for suggestions.
Once the hardware is dealt with - first you fix it, then you memtest it, then you wipe the hard disk with dban (Darik's Boot and Nuke), then you install an operating system, then you install a software toolkit [STK]. My software toolkit is a collection of applications that routinely gets installed on PCs before they are given away. It include utilities, productivity applications and games. I've got a special form to help me keep track of the status of a PC being worked on. The act of working on these PCs helps exercise my brain.
There is a broad spectrum of employees - from volunteers to salaried employees. The volunteers would ideally be used on less demanding projects, with the benefit to the volunteer being the opportunity to gain current experience and learn new things. The path from volunteer to salaried employee is a broad one.
Intellectual activity and the NHS
Judging matters based on the sizeable population of patients I have seen, intellectual activity and its encouragement are rare. I was diagnosed late in life - roughly when I was 30.
If I'd been diagnosed when 18 years old, I would have been medicated and taken out of normal life and into the culture of being admitted onto and discharged from psychiatric wards at a key point in my development. Eventually I would be discharged into social housing (a council flat).
By being diagnosed later on in life, I experienced those things later on. I was able to do A levels, go to University and work as a programmer - something I am very grateful for. I was last an in-patient in hospital in 2004. I was suffering heavily from cognitive impairment and I used a variety of mental stimuli to return to a reasonable level of intellectual activity. Some teenage patients do go on to do academic work but all I can say on the subject is that personally it would have made a demanding situation even more difficult.
What can patients do?
Well... while care in the community and voluntary work are helpful, it means the I.T. tradition of moving house to get a new job just can't happen. So that means working as a volunteer (e.g. Contact), working for a software producing company and communicating over the internet, or in a FLOSS (Free/Libre Open Source Software) project (but which one?), writing book reviews for CVu. Some of these suggestions should ideally be supported by a mentor via email.
What advantages do patients have?
There is an evolutionary creativity bonus in favour of people with mental health problems. [Preti97]
Artistic endeavour is encouraged by the NHS - there is Art Therapy where the patients create art and it is analysed by an expert. Then there are certain aspects of Occupational Therapy - from creating Easter and Christmas cards to painting (pottery and woodwork have been discontinued).
Some illnesses are known to enhance mathematical ability. Certain articles in the press have discussed the benefits of having an autistic mind.
What can companies do?
The main foundation is simple: understanding and flexibility, structure and support. Companies would have to accept that sometimes people relapse and will eventually recover the ability that is usually impaired in such circumstances. However, when provided with supported opportunities/projects for people to work on, people are more likely to stay well (stress permitting) for longer than those who don't do some form of work.
Flexibility in working practices would be necessary - one size does not fit all. Most people with mental health issues would typically be working for a much shorter working week than is conventional. Also, for lots of sufferers, travel is very difficult so a distance working opportunity would be good. As well as shorter hours, job sharing is a possible solution.
A key factor would be to provide work which isn't time critical. In Contact that could be refurbishing PCs, tutoring other members of Contact, providing initial technical support. In a software environment that would probably be R&D, testing and documentation. Some repetitive tasks can be a therapeutic activity - e.g. doing the washing up in the Kiff Kaff or installing free software packages (I've installed OpenOffice over 100 times now - on different PCs :).
What can the rest of us do?
Be accepting of people's foibles. Be accepting of people's disabilities. In particular, helping people stretch themselves into new roles without triggering a relapse. For example starting a new employee on a small project which acts as a refresher task for existing skills. Then suggest new things to learn, help with that learning and gradually build up a skill base that is custom made for your business.
What can companies gain?
Consider what companies can get from a socially responsible recruitment and staff management policy. People in employment can experience mental health problems and providing support and flexible working conditions instead of making them redundant can be good for staff morale. Having a public policy of supporting existing and new employees that have mental health problems can be a source of good public relations.
Companies can tap an otherwise untouched vein of creative talent, people with mental health problems are a good place to start. [BBC]
References and resources
[BBC] Autism sufferers in industry: http://news.bbc.co.uk/1/hi/8153564.stm
[Bruntlett] My blog: http://schizopanic.blogspot.com/
[Contact] Contact's web site: http://www.contactmorpeth.org.uk/
[C-Wiki] Contact's Wiki: http://contactmorpeth.wikispaces.com/
[NHS] NHS web site - http://www.nhs.uk/conditions/schizophrenia/Pages/Introduction.aspx
[Preti97] Preti, Antonio and Miotto, Paulo (1997) Creativity. Evolution and Mental Illnesses: http://cogprints.org/2009/1/preti_a%26miotto_p.html
[NewScientist] Advantages of autism: http://www.newscientist.com/article/mg20627581.500-the-advantages-of-autism.html
[NorthTypeWear] Northumberland, Tyne & Wear leaflets:http://www.ntw.nhs.uk/pic/leaflet.php?s=selfhelp
[StGeorge's] St Georges Hospital: http://www.stgeorgeshistory.org.uk/site/
[STK] Contact's software toolkit: http://contactmorpeth.wikispaces.com/SoftwareToolkit
[Times] Genetics and the link between maths and autism: http://www.timesonline.co.uk/tol/life_and_style/health/article2060584.ece
[Wikipedia] Wikipedia info: http://en.wikipedia.org/wiki/Schizophrenia
Thanks to Kevlin Henney, Ric Parkin and the Overload Editorial Readers for commenting on this article. Also thanks are due to accu-general for replies to a message about this topic. In particular special thanks are due Huw Lloyd for his help with the writing of this article.
Overload Journal #97 - June 2010 + Project Management
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