SINCE 2002, UK-based charity Include Me TOO has been on a determined trajectory towards inclusivity for disabled children and young people from a diverse range of backgrounds. Through imparting their valuable guidance to families, Include Me TOO have empowered carer’s and parents to become champions of disabled children, inspiring others to strive for an all-encompassing society where all voices and needs are heard equally.
The first threads of Include Me TOO were spun in the summer of 2003, when founder Parmi Dheensa perused a collection of holiday photos capturing the unbridled joy of her son Callum, who has a range of needs including cerebral palsy and severe learning disabilities.
“Seeing Callum embrace life and shining so brightly, reminded me nothing was going to stop him from grabbing each adventure, which propelled me to establish Include Me TOO,” Dheensa tells me. This sentiment culminated in Callum’s promise, which raises funds for disabled children to experience tangible adventures and simultaneously, challenge misconceptions associated with disability.
Also occupying Include Me TOO’s compelling résumé is developing the first-ever National Charter of Rights for Disabled Children, which identified and verbalised a list of rights concerning disabled children and their representation. But, it is reframing the language surrounding the black, Asian and minority ethnic (BAME) disabled community that is the heart of Include Me TOO’s ethos, to address and dismantle the role of systematic racism in creating negative assumptions.
As Dheensa explains, “It’s not about projecting these aims upon the disabled community, but working with them in meaningful participation, to express themselves, to be taken seriously and to be seen.”
Parmi Dheensa and her son Callum
What first inspired you to establish Include Me TOO?
I worked in both the public and civil society sector developing strategies, policies and services in reducing inequalities faced by Black, Asian and Minorities and Ethnic communities (referred to as BAME I grew concerned about the lack of representation, research and data in regards to BAME disabled children, as various reports documenting and surveying the challenges experienced by disabled children did not include anyBAME insights or perspectives.
This resulted in not recognising or acknowledging the multi discrimination intersecting disability, ethnicity and race experienced by BAME disabled children and their identities. My son Callum is disabled and right from the onset there were barriers we experienced with inaccessible childcare, playgroups, playgrounds, leisure, recreation, transport – a maze in navigating this disabling society.
Language associated with disabilities and impairments is a barrier, as for BAME communities, the references used for ‘impairments’ or ‘disability’ can be derogatory and translates as an infliction, something wrong with the person. Language matters, representation, identity as a disabled person matter, diverse authentic narratives and meaningful dialogues all matter.
How could I have stood by and done nothing as a practitioner who delivered on equality and diversity? There always is a very deep personal connection when someone starts a movement, gets involved with activism, sets up a non-profit and mine is my son Callum.
As a British Asian Sikh my family, my community installed the Sikh principles of SEVA my son Callum’s journey and what he has taught me reflected the Sikh teachings of compassion, humility, equality, fairness, inclusion which were fundamental in establishing the charity Include Me TOO.
Include Me Too
What are the most significant challenges you have faced over Include Me TOO’s 20-year existence and how do you overcome these challenges?
There is very limited information and data in regards to the lived experiences of BAME communities with disabled children, young people and adults. Include Me TOO have led on calls to actions alongside BAME civil society organisations and BAME disabled people regarding the persistent inequalities they face.
The charity has advocated and accessed influential spaces, ensuring when we are afforded the privilege to have direct face to face dialogue with those who influence national policy and strategies we extend opportunity to those on the same journey as us.
Examples of this were organising and delivering at the House of Commons the briefing report, ‘Time for REAL ACTION’, the charity produced. The briefing report referenced over 40 studies and research papers over a period of 15 years highlighting very little has changed in respect of the services, support and participation of BAME disabled children and their families. The key issues raised in this document are still present today.
During 2016 Include Me TOO organised the House of Lords Roundtable Event a call for action asking the government to re-address the balance of Equality, Race and Disability and the laws that protect these characterises to be adhered to as another generation of disabled children, young people and their families needs have been overlooked.
I had the privilege to attend and speak at the United Nations in Geneva 10th Anniversary for the Convention on the Rights of Persons with Disabilities where I presented on the impact Race, Disability and Equality the discriminative systems in the UK failings of BAME disabled children, young people and their families.
Global Disability Children Summit
With schools shutting and services withdrawn, quite a few charities have voiced their worries that disabled children and young people have been forgotten about during the pandemic, is this a dilemma you have encountered? And how are you supporting families during this time?
Yes, many mainstream services either reduced their support due to cuts in disabled provision, or they closed completely during the pandemic. The impact of this on families with disabled children and young people, shielding and with completely no contact with people was devastating.
Families reported feeling mentally, emotionally, physically, and financially drained. In a period of uncertainty, many parents and carers had become fearful, anxious, and stressed as they are left to care for their child’s health, learning, and emotional wellbeing in complete isolation, as well as financial worries.
Our service has become a vital lifeline for not only many of our local families isolating, but families with disabled children across the region with online support having national reach.
On a practical level, our team provided social distancing outreach and home visits, conducting home distribution deliveries of food, hot meals, prescribed medication, sensory and activity pack resources to disabled children.
Parmi Dheensa, founder of Include Me TOO
It’s been over 10 years since the charity developed the first-ever National Charter of Rights for Disabled Children and Young People. What are some of the charity’s most significant achievements during the past decade and do you think you have seen a successful change in attitude towards young people living with disabilities?
The Disability Rights Respecting Schools programme was successfully delivered increasing disability awareness, and supported disabled people to know about their rights. Include Me TOO advocated, organised and provided access for disabled young people to an international platform held during The Commonwealth Heads of Government Meeting in April 2018.
This was the first-ever official Commonwealth Disability Youth Led Roundtable Event where disabled young people representing several Commonwealth countries were able to present on topics that mattered to them and their peers, highlighting the key issues impacting them.
Together we established the Commonwealth Children & Youth Disability Network (CCYDN) which was officially affiliated as a Commonwealth Youth Network and is the first-ever Commonwealth disability children and youth network. The aim is to advocate for disability rights and meaningful participation in youth movements for disabled children and young people throughout The Commonwealth.
Disabled young people representatives of organisations from several countries worked with CCYDN and Include Me TOO during May and June 2020 to provide the first detailed response regarding the impact of the pandemic on disabled children and young people. Through roundtable discussions, they produced the Covid-19 Children and Young People with Disabilities Global Statement and Recommendations.
Include Me TOO at No 10 Downing Street
One of Include Me TOO’s fundamental values is supporting the needs of BAME disabled children, I saw that you wrote on Include Me TOO’s website that ‘Though there was increased government funding over the past few years, no positive action or resources have been allocated to reduce the inequalities experienced by BAME disabled children’ do you think these pledges are actually tokenistic and the needs of BAME disabled children are continually overlooked by those in positions of power?
During the pandemic, the fragmented society and inequalities surfaced can no longer be ignored. The health inequalities, social and economic inequalities experienced by the BAME community and the disabled community were evident causing much concern.
The inaction of those in positions of power over the years are responsible for the increasing inequalities impacting the life chances of B.A.M.E disabled persons. Furthermore, the government also are amongst duty bearers who have an obligation to uphold and protect the human rights articles.
Include Me Too community led discussions
Do you have hope that we will reach a future inclusive society where disabled children from all backgrounds are treated equally and their voices and needs are heard?
Yes, I remain hopeful for a disability inclusive society. We have a lot of work to do we all have a role to play, a responsibility.
In continuing our combined endeavours to ensure disabled children and young people are aware of their rights, to have their basic needs to live, survive, develop and thrive supported, to be safe, protected from all forms of abuse or discrimination.
We need to keep morale, celebrate each breakthrough along the way, work in solidarity to rise to the challenge – giving up hope is not an option.
by Sophia Ford-Palmer