What questions do people ask about parenting

Parenthood in people with physical and sensory disabilities

“During my pregnancy, I was mainly concerned with technical aids for caring for the child, as my freedom of movement is restricted due to my spastic paralysis. I thought about the transport, lifting it up and into the bed, etc. I called a technical assistance center and asked if they had the appropriate aids. The man said: Yes, of course! ’I was overjoyed. A week later I got some brochures about aids for disabled children ”(Seipelt-Holtmann 1993, p. 20).

This example of a young mother who, upon request, only received offers for the support of a disabled child and not, as requested, for herself as a disabled mother, illustrates two things: On the one hand, a social prejudice that disabled men and women who wish to have children always respond to meet again, namely that disabled people are fundamentally unable to have and raise a child and that there are therefore no disabled parents whose needs must be taken into account. On the other hand, the above example also illustrates the lack of suitable aids for disabled parents. Although the quote is from 1993, the situation of disabled parents has not changed significantly to this day. There are still hardly any suitable support options and aids for caring for the child and disabled parents are still not present in public, i.e. they are not taken into account when planning offers, for example, and there is still no right to parental assistance.

Since affected parents themselves became aware of their situation in the 1990s by publishing books, holding conferences and founding a Federal Association of Disabled and Chronically Ill Parents - BbE eV - the topic of parenting and disability has been discussed in specialist circles, but it is more likely focus on the situation of mentally handicapped people. On the other hand, the concerns of physically and sensory disabled parents still receive little attention in public and in the professional world and accordingly only few and no more recent research results are available.

The article deals with the conditions that parents with physical or sensory impairments need in order to be able to live their parenting positively. Since many parents with mental disabilities need other, mainly educational aids, they will be mentioned in the following in the following.

Like everyone else, people with disabilities have a right to parenthood. This is derived, among other things, from Article 23 of the UN Convention on the Rights of Persons with Disabilities. It says:

"1. States Parties shall take effective and appropriate measures to eliminate, on the basis of equality, discrimination against persons with disabilities in all matters relating to marriage, the family, parenting and partnerships, in order to ensure that (...) b) recognizes the right of persons with disabilities to freely and responsibly choose the number of their children and the birth intervals, as well as access to age-appropriate information and education about procreation and family planning, and are provided with the necessary means to exercise these rights; (...) "

Nowadays the question is no longer whether disabled people should, can or are allowed to become parents at all [1] but how and under what conditions they can live their parenthood.

Disabled people often encounter prejudices when they want to have children and in everyday life with a child they encounter great difficulties. Disability and parenting are two issues that many people see as mutually exclusive. The idea that people who are considered disabled and who are themselves dependent on help in various areas of life care for and raise a child seems so absurd to many that parents with disabilities and their needs are not even noticed by the public (see Hermes 2004).

The reality shows, however, that the social perception of the disabled person with no partner or child is incorrect. After all, people with disabilities become mothers and fathers as well as non-disabled people, although not as often. According to the federal government's participation report, it is possible to

“Regarding starting a family (...) notice clear differences between women with and without disabilities. Almost three out of four women with impairments between the ages of 25 and 59 are childless "(BMAS 2014, p. 72),

But the figures also show that every fourth disabled woman has one or more children. The numbers are slightly higher for disabled men. Parenthood among people with very different impairments is therefore no longer uncommon. Especially disabled people who live outside of a special facility are now more likely to have the opportunity to live sexuality and various forms of relationships, including parenting.

If one looks at the situation of disabled people who live in homes, however, a different picture emerges. The home structures, such as accommodation in shared rooms, gender-homogeneous groups, the lack of private retreats and the often negative attitude of many institutions towards parenthood, make sexuality and partnership as well as living together as a family more difficult (cf. Hermes 2004). But that does not mean that people who live in institutions will not have children. In a survey of federal German disabled facilities about the number of parents with intellectual disabilities known to them, Pixa-Kettner came across surprising findings: The 670 carriers who responded reported about 1000 parents with about 1,300 children (see Pixa -Kettner et al. 1996, p. 230). Since dormitories are rarely geared to the care of disabled parents with children, and only very few services and facilities nationwide offer special housing and care offers for parents with intellectual disabilities, the parents concerned have little chance of living with their child - and this is still the case The majority of these families are separated, the mothers and their children are looked after in special facilities or the children are placed in foster families (cf. Zinsmeister 2006, p. 5).

Prejudice against parenthood among disabled people

Although people with physical and sensory disabilities in particular appear as mothers or fathers in social life, there are often negative social attitudes towards their parenthood. Women with disabilities in particular report that they encounter strong negative attitudes and discrimination before and during pregnancy, but also as mothers. Various prejudices and misconceptions are hidden behind the lack of acceptance of disabled mothers:

  • Disabled women give birth to disabled children
  • Disabled people cannot take responsibility
  • Disabled parents neglect or abuse their children
  • Children suffer from their parents' disabilities
  • Disabled parents definitely cause additional government costs

From today's perspective, these prejudices can be refuted, but they persist and are the cause of discriminatory behavior towards the parents concerned. For example, disabled people in Germany hardly have the opportunity to adopt a child or take care of them. A corresponding application usually fails due to the negative attitude of the responsible authorities. On the other hand, the probability of placement increases if couples, in which one of the partners is disabled, agree to take in a child who is also disabled (cf. Hermes 2004).

For fear of negative consequences, some mothers and fathers with disabilities do not apply for urgently needed help to care for the child. They fear that their child will be taken away from them, as some youth welfare offices equate the need for help with parental incompetence. Kerstin Blochberger writes about this:

“Unfortunately, these concerns are not unfounded, especially if the disabled parent is a single parent. It happens (...) that employees of the responsible youth welfare offices order the child to be placed in a foster family or in a home without exhausting the possibilities of support within the family. "(Blochberger 2005)

Everyday barriers

Parents with disabilities experience the same social prejudices and marginalization as other disabled people. In everyday life you encounter barriers such as a lack of ramps and elevators, a lack of information in Braille or a lack of sign language interpreters.

As parents, they encounter the same structural difficulties, such as a lack of childcare options, a lack of part-time jobs, etc., which families in Germany are generally affected by. This potentiation of stressful factors makes everyday life with their children particularly difficult for disabled parents. In addition to the usual everyday barriers, they also encounter a wide range of obstacles in all areas of childcare and care, which make it difficult for them to participate in social life.

Access barriers for the physically handicapped

Access to public buildings such as authorities, leisure centers, schools and kindergartens etc. is often difficult or even impossible for physically handicapped people because there are steps but ramps or elevators are missing. Doors are too narrow, there are no toilets for the disabled, which are also important for the toddlers of disabled parents, and a large part of public transport is still inaccessible to people with reduced mobility. Public family offers (such as baby groups, mothers centers, swimming pools, parks, children's playgrounds) are often inaccessible or usable for mothers and fathers who use a wheelchair. For parents with reduced mobility, one of the greatest limitations of family life is the lack of suitable, barrier-free transport options for their child. They often do not know how to carry the baby or toddler from one place to another, inside and outside the home. Because they cannot use the mostly inaccessible public transport by themselves, they also have to rely on a car. But not all of them can drive a car themselves or have a converted vehicle.

The barriers described can lead to the social exclusion of an entire family or severely restrict the families in their joint activities. Since kindergartens and schools are usually not barrier-free either, the choice of institution often depends on whether it is accessible and not on the decision which institution is preferred from an educational point of view. The question of accessibility is extremely important for disabled parents, because it not only determines whether or not they participate in the life of the community, whether they are socially involved, but also about having options and being able to make their own decisions.

Communication barriers for blind and deaf people

Even for blind parents, the greatest difficulty lies in the lack of accessibility. The lack of communication options is a major problem for them. Because there are no barrier-free, tactile information offers in kindergartens and schools (for example notice sheets or information brochures in Braille), visually impaired people are often excluded from important information. In order to enable them to communicate with their offspring in a way that is suitable for children, they are also dependent on children's books and games that are suitable for the blind, but these are only available in very small numbers.

Deaf parents with hearing children face far stronger communication barriers. They are faced with the problem of barely gaining access to their child's hearing world. Information, knowledge and education are difficult to access and they have great difficulty getting information and support on educational issues. Satisfactory communication with educational professionals in kindergartens, schools and educational counseling centers has so far hardly been possible due to a lack of support in the form of financed sign language interpreters. Because this urgently needed support service is not provided, the parents concerned sometimes have to be satisfied with completely inadequate workarounds, such as using their children as interpreters or reading written protocols after parents' evenings.

Aids and barrier-free products to care for the children

There are many practical questions for disabled parents, such as: How can I change my child's diaper if I cannot drive the wheelchair under the changing table? Or: How can I, as a blind father, look at picture books with my child? Whether disabled mothers and fathers can partially look after their children on their own depends not only on the accessibility of social areas but on other factors. Technical aids and barrier-free products for caring for the child are also very important. Blind parents, for example, use aids such as speaking clinical thermometers, deaf mothers mainly use visualization techniques such as baby monitors that send light signals. Physically handicapped parents, on the other hand, need adapted children's furniture or carrying options. The dependence of disabled parents on outside help can be partially reduced if suitable aids and (children's) furniture are available that have been adapted to their needs. In this area, however, there is still a glaring shortage and often financing difficulties, as many aids are not listed in the catalog of the health insurance companies.

Parental assistance for severely disabled parents

A physical or sensory handicap does not fundamentally affect the parenting skills. But sometimes they are unable to carry out all of the actions themselves in the way that they deem it useful and necessary. To compensate for this, some parents need support in the form of personal assistance, which basically enables them to carry out their parenting duties.

Julia Zinsmeister has summarized this problem very clearly:

“Figuratively speaking, they need people to lend them their eyes, ears, hands or feet. Be it to pick up the broken glass for the wheelchair-driving mother, on which a toddler threatens to be injured, or to take care of the child on the playground for a blind father. "(Zinsmeister 2006)

In professional circles, the term parental assistance is used for the form of support described. For physically handicapped mothers and fathers, assistance with mobility, support with child care and help with the household is particularly important. Visually impaired and blind parents, on the other hand, tend to need assistance with the supervision of small children, with mobility outside the home or later with homework supervision. Whether and how much assistance a disabled mother or father needs is very different. This depends on various factors such as the number and age of the children, the type of disability and severity of the limitation, the aids available and the living environment.

So far there is no explicit legal right to parental assistance. The following is available on the website of the Federal Commissioner for the Disabled, Verena Bentele [2]:

“Book IX of the Social Security Code strengthens the rights of women with disabilities, but it does not contain any express entitlement to parental assistance. If parents are granted such assistance, benefits under Book VIII of the Social Code can be considered as benefits for the child. Furthermore, it can also be about benefits of integration assistance as benefits for participation in life in the community (§§ 53, 54 SGB XII in conjunction with § 55 SGB IX). "

Current financing options for assistance are as follows: In the context of professional or medical rehabilitation, childcare costs and costs for household help are covered by the respective cost bearers. Disabled parents who do not receive any rehabilitation measure can apply for the costs for the necessary assistance from health or care funds, social welfare and youth welfare offices. Because there are no clear legal regulations on parental assistance, disabled people who need help to exercise parenting often encounter enormous difficulties in enforcing this need from social benefit providers.

Parental assistance, however, brings a number of positive factors with it: For example, mothers and fathers with severe physical limitations are given a great deal of independence from the helpfulness of their fellow human beings. You can determine the time, type and scope of the assistance yourself and organize everyday life according to your needs. They are enabled to react to the child independently of the partner and to live their own views of upbringing. In addition, the independent relationship with the child is promoted if the severely disabled parent can carry out their own activities with the child with support. For some mothers and fathers, active shaping of parenthood is only possible through assistance.

There is a need for parental assistance in the case of physically and sensually handicapped parents, especially in the first three years of the child's life, and this is greatly reduced afterwards (cf. Hermes 2004). Deaf mothers and fathers are, however, also dependent on sign language interpreters for communication with the outside world, whenever medical, school or official matters need to be settled. According to § 17 SGB I, deaf people have been entitled to free sign language interpretation in all social benefit areas since July 2001, but this regulation only applies to contact with doctors and authorities and does not include kindergarten and school.

Legal compensation for disadvantages

To compensate for a disability, the legislature has created some support options, such as the barrier-free conversion of the apartment, special computer equipment for blind people or vehicle aids for people with mobility impairments. However, many of these statutory compensation for disadvantages are linked to gainful employment, i.e. mothers and fathers with disabilities who are not employed are excluded from these benefits. In rare exceptional cases, a vehicle was also financed if a disabled person needed it to participate in community life.

Since the chances of mothers with disabilities to work with a child, for example by finding a (part-time) job, are very low, they not only have less financial starting conditions than many other families, but also the disadvantage that they cannot apply for necessary everyday help. The Federal Ministry for Family, Seniors, Women and Youth states in a brochure:

“If, for example, a working woman goes blind as a result of an accident, the costs for appropriate retraining and the necessary equipment in the workplace are covered. However, under the same circumstances, a woman who is involved in family work is usually not financed for the necessary mobility training and the renovation of the apartment. "(BMFSFJ 2003)

Summary and Outlook

Despite the limited opportunities to participate in society and the lack of support structures, parents with disabilities find life with a child to be a great enrichment and many of those affected choose this way of life. In everyday life with a child, they encounter a variety of barriers that limit them in coping with family work, may prevent them from fulfilling their educational tasks or force them into unwanted dependencies on family members or friends. In addition to impairment, there are often prejudices about a lack of parenting skills and structural or social barriers. When parents try to organize help, they are often sent back and forth between authorities because of legal ambiguities, and they often wait in vain for support in caring for their children. In this way, many families are pushed into poverty and social isolation (cf. Hermes 2004). It is not uncommon for the mother or parent and child to be separated, although the child's well-being is not endangered by the parents but by a lack of help such as parental assistance or accompanied parenting (see Federal Association of Disabled and Chronically Ill Parents 2011).

Only a few of the problems that arise in everyday life are causally related to the impairment of the parents. The far greater part is based on environmental barriers and inadequate framework conditions. If there is no way to finance the necessary assistance or technical aids, disabled parents may have to forego these forms of support altogether. However, the lack of required support can have extremely adverse effects on the physical and psychological situation of parents with disabilities and thus on the entire family. There is an urgent need to create clear legal regulations for parental assistance so that disabled parents are no longer pushed back and forth between child and youth welfare on the one hand and handicapped care on the other, and that they receive the help they receive with family work need. On the other hand, the approval of compensation for disadvantages should no longer be linked to an occupation. Necessary aids must be financed and included in the aids catalogs of the health insurance companies.

Disability and parenting can be easily reconciled if the necessary framework conditions and support options are available.

Footnotes

[1] An anthology was published in 1977 under the title “Should, can, may disabled people marry?”, Which was reissued in 2000 in unchanged form (cf. Kluge & Sparty 1977 and 2000). In this book, different authors investigate the question of reproduction in disabled people with special consideration of various types of disability as well as medical, ethical and theological perspectives. Most authors agree to a marriage of disabled people, which is seen as the only acceptable form of partnership, only on condition that it remains childless. On the other hand, all experts demand that the disabled spouse renounce children if there is a risk or suspicion of inheritance of the disability (cf. ibid.).

[2] Website of the Federal Commissioner for the Disabled, keyword parental assistance, available here (accessed: July 22, 2015).

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  • Blochberger, Kerstin (2005): Disabled Parents - Still a Taboo or Already a Trend? The reality between admiration and crossing borders. Available (accessed on July 22, 2015).
  • BMAS (2014): Participation report of the federal government on the living conditions of people with disabilities. Participation - impairment - disability, Berlin
  • BMFSFJ (Ed.) (2003): Einmischen - mitmischen. Information brochure for disabled girls and women. Bonn.
  • Federal Association of Disabled and Chronically Ill Parents (BBE) e.V. (2011): Statement on the draft bill of the Federal Government's National Action Plan for the implementation of the UN Disability Rights Convention (NAP), Hanover. Available (accessed on July 22, 2015).
  • Hermes, Gisela (2004): Living disability and parenting - not a contradiction in terms. A study on the support needs of physically and sensory disabled parents in Germany. New Ulm.
  • Pixa-Kettner, Ursula; Bargfrede, Stefanie & Blanken, Ingrid: "Then they were mad at me that I wanted to have the child ..." A study of the living situation of mentally handicapped people with children in Germany. Bayreuth. 1996
  • Zinsmeister, Julia (2006): State support for disabled mothers and fathers in fulfilling their educational mandate. Legal opinion on behalf of the Network for Disabled Women Berlin e.V. with the support of Aktion Mensch. Nuremberg / Cologne. Available (accessed on July 22, 2015).
  • The contribution is a slightly modified and expanded version of the lecture “Crutches, Babies and Barriers: Parenting in People with Physical and Sensory Disabilities”, held as part of the symposium “… with a child? Future prospects of self-determined parenthood among people with disabilities ”on June 26, 2014 in Frankfurt / Main, organized by pro familia Hessen

Author

Prof. Dr. Gisela Hermes
HAWK - University of Applied Science and Art Hildesheim / Holzminden / Göttingen
Faculty of Social Work and Health
Brühl 20, 31134 Hildesheim, Germany

e-mail
 

Created on March 31, 2003, last changed on September 11, 2015