A mother’s call for an end to disability by proxy

Our network member Laura Julia Fiquet, founder and president of Union des Mamans d’Enfants Handicapés – UMEH  participated in a recent EU fact-finding workshop on children with disabilities. Held in Bucharest, the event was part of the European Commission’s feasibility study on a potential Child Guarantee.

An expert on the topic (Laura herself is a mother of a child with a disability), she underlined the many problems she and other mothers in France and elsewhere in Europe face on a daily basis.

They go from job loss, loss of financial autonomy or  total financial dependence on the spouse – to loss of social rights (unemployment, retirement, sickness) with the precarious social minimas that this implies.

Family cohesiveness is also compromised, such as separation from the spouse or the renunciation of having another child.

In many cases these mothers also encounter social isolation and a high mental burden, to the point of exhaustion.

Laura also highlighted the lack of competent social interlocutors who could accompany mothers.

To address some of the problems, she proposed the following:

• Recognition of the official status of a mother caring for a child with a handicap
• Creation of a specific social legal status that guarantees the mother a dignified income and social security structure
• Creation of help centers to listen and provide counselling
• Facilitating access to employment and training facilities by including affected mothers in priority employment profiles, as is currently the case for persons with disabilities in France
• Support home-based business endeavours. This can be an effective alternative to ‘getting back to work’ while allowing the mother to take care of her disabled child
• Education of doctors and obstetricians on the subject of welcoming mothers who are dealing with a disabled child and are afraid of a potential new pregnancy. Many have desires to bear further children, but renounce them because of fear and misinformation
• Recognize the notion of disability by proxy

1. Mothers are directly affected by the consequences of their children’s disability on their chances of finding employment. They are not disabled themselves but have to be absent from work regularly to ensure medical appointments for their frail children
2. There is discrimination in hiring. Employers ask mothers to justify themselves for the gaps of several years on their CVs. If they say they have a disabled child there is a good chance that the professional interview will not be successful. And if they keep quiet about this period then it gives a false picture of this long period of inactivity
3. Accessing employment for mothers of children with disabilities is an obstacle course
4. Unfortunately, mothers’ skills do not stand up to the prejudices and fears of employers on the subject of children with disabilities
5. And there is no law to protect mothers from this kind of discrimination

Laura welcomed the Commission’s endeavors and hoped that the situation facing many mothers like her would improve.

She emphasized that solutions are needed at the policy and societal level throughout Europe. This is an important step towards the recognition of the obstacles. She is positive that this feasibility study will bring clarity and firmly present the changes needed to tackle the problems. The study needs to provide the financial and logistical tools necessary to properly involve these families and their children with a disability in society. She also hopes that more family associations will be included in the study, because it is primarily the family that is in a precarious or vulnerable place – not taking this fact into account could lead to artificial or temporary solutions.

Laura’s concluding message was that if we want a child guarantee initiative to fight poverty and social exclusion, we need to hear the voices of parents and to address these social policies to the family as a whole. A child is embedded in a family environment and context and only by working hand in hand with the families, and the mothers in particular, (many children living in precarious situations live only with their mothers) can we find the solutions needed to support disadvantaged children.