30.11.2015 You have the will, you have the power

The International Day for Persons with Disabilities is celebrated on Dec 3 every year. This year the theme is Inclusion matters: access and empowerment for people of all abilities, and one of the sub-themes is – Including persons with invisible disabilities in society and development.

Often when we think about ‘inclusion’, persons with physical and sensory disabilities come to mind.  We think about making buildings physically accessible for persons who use wheelchairs and printing books in Braille for children with visual impairments.
‘Inclusion matters: access and empowerment for people of all abilities’ is the theme for the 2015 International Day of Persons with Disabilities.  On this day, December 3, we will be called to remember that true inclusion will never occur unless persons with invisible disabilities are included in society and development. But what do we mean by ‘persons with invisible disabilities’?

Persons with invisible disabilities include those whose disabilities are not immediately obvious.  It is estimated that worldwide, 1 in 4 persons will experience a mental health condition at some point in their lives.  Despite being extremely common, mental health conditions are some of the most untreated and most stigmatized around the world.  People with psychosocial disabilities are amongst those forgotten and misunderstood because of the ‘invisible’ nature of mental illness, leading to human rights abuses.
As an example, in Sierra Leone, people with psychosocial disabilities have historically been under prioritized, forgotten and abused.  In the national health budget, less than 1% of the budget goes to the Sierra Leone Psychiatric Hospital, and 0% is allocated to other mental health services.  The mental health legislation of Sierra Leone, ‘the Lunacy Act,’ was written in 1902 and is yet to be rewritten or updated.  In addition, a shocking number of human rights abuses take place around the country on a daily basis, including the routine chaining of people with psychosocial disabilities.
Mr Kaikai is the secretary of the Sierra Leone Association of Service Users and Family Support Group, explains: “Thousands of people with mental health conditions around the world are deprived of their human rights. They are not only discriminated against, stigmatised and marginalised, but are also subject to emotional and physical abuse in both mental health facilities and within their communities.”

But things in Sierra Leone are slowly changing.  5 years ago, the Enabling Access to Mental Health programme began with the support of CBM and Global Initiative of Psychiatry (GIP) and funded by the European Union.  The aim of the programme was to do exactly what the name suggests: to improve access to mental health care.  A large focus of the programme revolves around mental health advocacy and it was for this reason that the Mental Health Coalition – Sierra Leone was born.

The coalition brought together a broad range of stakeholders: health care providers, teachers, religious leaders, local and international non-government organizations, and many other members interested in mental health.  The Coalition was successful at pushing for changes in mental health in Sierra Leone including launching the National Mental Health Policy and ensuring that patients received food and water during a strike at the psychiatric hospital.  However, until recently, there were very few people with psychosocial disabilities in the Coalition.  Despite having a safe and welcoming environment for people psychosocial disabilities, the Coalition continued to speak on their behalf rather than giving them opportunities to speak for themselves.

In 2014, however, a new committee within the Coalition was formed: the Sierra Leone Association of Service Users and Family Support Group. The group has 27 members: mental health service users and their family members. The group meets on a monthly basis with the aim of empowering service users to advocate with their own voice for better medical facilities, medication, social inclusion and respect for the dignity and human right of people with mental disability.

Mr. Kaikai highlights the importance of including family members in the group: “Something we will never forget is how much our families have suffered and how positive it was for them to get support from other families in similar situations. And also, even more important, we couldn’t have recovered if the family hadn’t been there with us, helping, understanding, encouraging. Our families own our lives.”

This group was established with 6 goals

  • To know each other better
  • To share views and experiences
  • To mobilise for action
  • To provide a platform for awareness raising on those issues that are crucial to  mental health
  • To minimise the stress and stigma attached to mental illness
  • To express the needs of service users to government and other service providers.

The group is working towards their goals by focussing their meetings on topics that members have decided are important, including: stress management, sharing experiences to offer each other support and group counselling from a qualified counsellor.
As the group continues to grow in empowerment, they continue to set new goals and ambitions.  They hope that group will expand in numbers so that more service users can benefit from their activities and experience an increase in confidence through the peer support that the group offers.

Mr. Kaikai says:  My advice to other service-users would be, don’t ever think you are just mentally ill people with no strength to achieve something great. You might also want to know that there is dignity in mental health, as there is no health without mental health.

In a country where persons with psychosocial disabilities were invisible, service users and their families are learning to take a stand in a united front, to speak loudly and to be seen.

You have the will, you have the power. Dignity in mental health. You own the future. Long live the Service Users and Family Support Group.
Mr. Kaikai, Secretary of the Sierra Leone Association of Service Users and Family Support Group