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Association Profile

 

Aims

When disabled women become mothers they usually have to cope with everyday family life under more difficult conditions than mothers without disabilities.

For women and men with disabilities there are hardly any support agencies for parenthood; disabled and chronically ill women often feel misunderstood, and healthcare professionals frequently leave them to cope as best they can with the challenges of pregnancy and birth. Deaf women, for instance, often have to fend for themselves because of communication problems. For paralysed women, even conceiving starts with questions about alternative methods to normal intercourse. Ignorance of possible support can still today lead to deciding against children however much they may want them. Frequently, from the point of view of the medical profession this is connected with advice to be sterilised or abort that has little to do with a woman's right to choose. For disabled fathers, too, there are many obstacles to actively playing a paternal role.

Despite all this the number of disabled parents is growing; on the one hand living conditions for people with disabilities have improved over the last 20 years and on the other hand women are on average having their first child much later than they did 20 years ago. This means that their lives as active parents are more frequently afflicted by illness or disability.

Since the mid 1990s, disabled and chronically ill parents have been meeting regularly to share and learn from each other's experience at seminars run by bifo e.V.. Disabled women with older children found that they were glad to pass their experience on to parents with young children to save them the long and arduous learning from events and thus free their time and energy for building relationships with their children.

For this reason, in 1999 we - all of us disabled parents - founded the national association of disabled and chronically ill parents (bbe e.V.). Together we wish to represent and assert the rights and interests of disabled mothers and fathers in Germany. The aim of the association is to enable disabled and chronically ill people who are parents, parents-to-be, or who wish to have children to make their own life choices. For this we are setting up a nationwide information network where people seeking advice can find answers to their personal questions; we share the experience we have gathered about conception, pregnancy, birth and parenthood among people with disabilities or chronic illnesses. We also provide information to health and social work professionals such as midwives, gynaecologists, counsellors in family education facilities and youth work etc., to dismantle prejudices and make practical help possible.

Our services at present:
  • Telephone or personal counselling (peer counselling) on conceiving, pregnancy, birth and parenting for disabled and chronically ill people and professional agencies Mitarbeiter
  • Arranging contacts between disabled parents and to local facilities such as discussion and support groups
  • Parenting seminars and conferences whose findings are published as self-help guides
  • Our own website with announcements of seminars, publications and a guest book
  • Media representation e.g. in journals of self-help groups and disabled people's associations.

We have already held 5 annual meetings with parenting seminars and an AGM. The conferences were very well attended and many participating parents have said how much they had enriched their lives.

At the end of 2001 we appointed our first full-time worker, and since then the information and documentation centre for disabled and chronically ill parents in Hannover has been collating personal experiences and publishing them in the form of self-help guides for parents and voluntary counsellors. In December 2001 the first guide appeared, on 'Help with family counselling for disabled and chronically ill parents', with the financial support of the Federal Ministry for Family, Senior Citizens, Women and Youth and the Arbeitsgemeinschaft Selbsthilfe Herford (Herford self-help working party). This first volume in our advice series was sold out after a year and we issued the third printing at the end of 2003.

The first national conference, 'Child trailer for electric wheelchair needed - special equipment for disabled parents', took place in Hannover in 2002. The documentation was published in the same year as volume 2 of our advice series.

Our contribution to the European Year of Disabled People in 2003 was to stage a nationwide competition for ideas on barrier-free children's and baby furniture and participation on the jury for the national competition on barrier-free accommodation for family holidays Familienerholung. The most recent bbe e.V. publication is a documentation of the ideas competition on barrier-free children's and baby furniture for disabled parents at the beginning of 2004. Further services include training for volunteer counsellors and the annual parents conferences.

All seminars, of course, provide barrier-free accommodation, childminding and signing for the deaf. The documentation of the events makes the proceedings available to all who could not be accommodated due to lack of space.

We wish to encourage disabled parents to seek support for their everyday family lives under difficult circumstances. Many obstacles are created by society; together we seek to influence political change.

 

The need for scientific investigation

German law on social matters is inadequate in the way it addresses the various needs of disabled parents for support. The general obligation to consider the needs of disabled parents (German statute book SGB IX, § 9) is, on initial practical experience, insufficient. As long as no real changes are made to the catalogue of benefits it will continue to be difficult for disabled parents to, for instance, claim assistance for family support. The present economic climate and cuts in services will make this even more difficult, although here as in other areas the financial consequences of neglecting preventative support are often higher.

The first general investigations on this issue have already been made, although they address the basic needs of single groupings of disabled parents (so-called 'mentally disabled' and 'mentally ill' parents and their children). The support needs of physically and sensorily disabled parents have until now been investigated the least; there has been only one dissertation, by Gisela Hermes, since 2004.

Kerstin Blochberger

indokus project leader, bbe e.V.

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