Every child with SEND has a right to access the best provision to help them reach their potential. Their families must be treated with respect and dignity. Far too often, this just doesn't happen, which is why this website needs to keep existing.
For some families, it can feel like the barriers to support have been unfairly (and unlawfully) made even higher: because of their ethnic or racial background.
Today we hear the experiences of a parent who believes getting support for her disabled children has been made much harder by racial discrimination and stigma within the Black African community. All her information is anonymised to protect her and her family.
Why was my family treated differently?
I realised my children had various difficulties during their development checks and in the behaviours they showed. One of my children was assessed as having social, emotional and mental health needs (SEMH), and was threatened with exclusion. I had to fight to get my children diagnosed to obtain the support they need. I was often shut down quickly, and my concerns were issues with how I was parenting and that I was making it up.
I was born in Africa and moved to the United Kingdom in 2000. English is the official language. In my country, SEND is not recognised, and the superstitions about disability come from beliefs such as witchcraft, sex, God, the supernatural, and juju.
A number of beliefs in respect of disability have been isolated in the literature on disability in Nigeria. Abosi and Ozoji (1985), for example, note that beliefs about disability are attributable to different factors such as witchcraft, sex, God, the supernatural and juju.6 According to them, these beliefs are generally taken to be the various causes of disabilities. Another aspect of disability beliefs is the one identiﬁed by "Desta": this is the belief that disability is a curse and people with disabilities are hopeless (1995).Religion, culture, and discrimination against persons with disabilities in Nigeria
My children have multiple special educational and health needs between them:
- Language disorder with a learning difficulty
- Moderate Learning Difficulties
- Primary Nocturnal Enuresis
- Achilles Tendinosis
- Low ferritin in the blood
- Sensory processing difficulties
- Sleep apnoea
While some medical professionals were supportive and helpful, I was not prepared for the next chapter. The start of the nightmare and allegations came from fifteen white professionals who never met us. Some of the allegations were:
- Serious concerns of coaching by the mother
- Continued risk of emotional abuse to the children
- Mum’s obstructive and manipulative conduct towards professionals
- Mum acts defensive and aggressive towards professionals
- Indications that these children may be exposed to Fabricated Induced Illness
Accusations of causing harm
I was put under the microscope for Fabricated Induced Illness* with all aspects of my parenting because of my race and cultural differences. Also because my children presented with complex needs and hidden disabilities, or behaved differently in different contexts. Some professionals who worked with my children did not have the expertise or skill-set, or any understanding of our culture.
Concerns were raised as to why my son had lotion rubbed into the back of his head. My son is black, and we use moisturising lotion for his hair. There were concerns about why he had needed the lotion and information was recorded and discussed where I had to justify my parenting or something familiar in black families. The school said I should have made them aware of ‘this’ first thing in the morning. The professionals made me feel that I could not look after my child and was not prepared to listen to my reasons.
On another occasion, a social worker visited my home and stated that the way I was living was "inappropriate". The building was not fit for my disabled children, and they were aware that it was social housing. I could not make any adjustments to the property, and I had requested to move home. The assessment report failed to report my home was unsuitable for the children's emotional wellbeing, health, safety, and independence. However, they continued to accuse me of emotionally abusing them without evidence, including further allegations of children's safety at home.
There was another occasion when the social worker visited, and my neighbour was in my home during the visit. The social worker asked if me neighbour was my helper. I was so offended, and the questions just keep coming, and my answers were twisted to fit their narrative.
I was asked to provide my immigration status on more than one occasion, and I was fearful of being deported.
Cleared, but the effects linger
I could go on and, the way the professionals conducted themselves was discriminatory and unprofessional. There was a power imbalance between me, and the professionals and they left me feeling very angry, tired, upset, and all aspects of my parenting were under scrutiny at every level. As a black single parent, I was judged by the colour of my skin first.
I have challenged the local authority, successfully won two tribunals, and all the allegations dismissed; however, the scars remain. I have suffered a loss in confidence and now experiences high levels of anxiety. It has affected my ability to seek employment as the allegations are still on record, as, when we have attended A&E or the GP, I receive a call from social care.
As a result of the way I have been treated, I am now fearful of future contact with any health, education or care services which has meant I sometimes have had to seek private health care for my own medical needs.
Today, we are still homeless, and I still must fight for equal rights for my family and me.
Professional MUST learn about families' different cultures
My message today to professionals working with black families is they must learn to understand differences and not assume that difference is terrible. Ask questions, but show respect and humility. Learn to recognise various cultural differences. I found it very difficult to find professionals who understand my families' needs; I think they call it 'cultural competence' and I have to say it was liking trying to find a unicorn.
Resources if you are affected by FII
*Fabricated or Induced Illness (FII) is the new name for Munchausen's Syndrome by Proxy, a rare form of child abuse, where a parent causes deliberate harm to their child or exaggerates symptoms. Any form of child abuse is unacceptable and any concern raised about possible abuse must always be considered carefully. However, we also know that growing numbers of parents of disabled children, especially those with cultural differences, undiagnosed conditions, or for example, Ehlers Danlos syndrome, which causes easy bruising, have been unjustly accused of FII. Some have had their children removed, leaving them to fight through the courts to get them back. While confident safeguarding is vital, we believe unjust accusations of FII have arisen because heightened anxiety by professionals, in the wake of publicised cases of missed child abuse, with devastating effects for the child.
If you have been unjustly accused of FII, here are some resources:
- Advice: CafCass: https://www.cafcass.gov.uk/grown-ups/care-proceedings.aspx
- Advice http://childlawadvice.org.uk/
- What if doctors don't believe my child is really ill?
- Parents Accused solicitor (if wrongly accused of abuse) http://www.parentsaccused.co.uk/
- Parents protecting Children (if wrongly accused of abuse) https://www.facebook.com/PPPC.UK
- Helpline: Family Rights Group http://www.frg.org.uk/need-help-or-advice
- CAB: https://www.citizensadvice.org.uk/family/looking-after-people/children-and-local-authority-care/
- Other links: http://www.familylives.org.uk/advice/your-family/social-services-and-your-family/coping-with-the-aftermath-of-having-your-children-removed-by-social-services/
- Know your child’s rights to social care support
- Safeguarding and children with SEND: What parents need to know
- Teaching social context to children with autism and why it’s vital for safeguarding
- Does child protection guidance discriminate against disabled children?
- Supporting families to participate in making person-centred decisions
- Restrictive Interventions: We need to change the way we think
- Social skills: How to understand and support autistic students
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