Disability rights, reproductive technology, and parenthood: unrealised opportunities

Abstract The common attitude towards parents with disabilities is suspicious. Whereas usually, people are expected to become parents as part of a natural–social life course, disability and parenthood are conceived as contradicting terms. This is due to negative perceptions regarding the parenting capacity of people with disabilities, and lack of adequate state support for children upbringing. Disability Rights theories portray different approaches, aiming to promote equality, considering the unique life experiences of parents with disabilities. They acknowledge the discrimination that takes place whenever accommodations are denied, and they bring a universal point of view to light. Through the case of Ora Mor-Yosef, a woman with a severe physical disability who initiated the birth of a baby girl, with no genetic connection to her, the article wishes to demonstrate the potential contribution of reproductive technology, combined with legal parenthood developments, and disability studies theories, to the advancement of parenting rights and opportunities for persons with disabilities. Regrettably, Ora’s case did not serve as a platform for such promotion. “Social disability obstacles”, suspicion, and negative attitudes that still prevail regarding parents with disabilities, have led both the government authorities and the courts to deny Ora’s attempt to accommodate reproductive technological processes and become a mother.


Introduction
Early in the year of 2013 a baby-girl was born. Nine months before, she was conceived through artificial insemination of donated ovum and sperm, implanted within the womb of an altruistic surrogate. This process was initiated by yet another woman, Ora Mor-Yosef, who wished to become the baby's mother.
Ora is a woman with a disability. Due to a severe muscular dystrophy, she uses a wheelchair, oxygen supply, and personal help around the clock. Due to her disability, Ora encountered fertility hardships, which led to the surrogacy process. But, when the baby was born, the welfare services took custody over her, and put her in foster care. Ora never saw her.
In this article, I wish to analyse this case, in which reproductive technologies enabled a pregnancy process without genetic or biological connection to the initiator, and to examine its potential to promote and advance parenting rights for persons with disabilities.
In the intersection of reproductive health, technology, legal parenting, and disability rights, lie new opportunities for parents with disabilities. In Ora's case, these opportunities were unrealised due to suspicion and negative attitudes towards parents with disabilities. These attitudes, I believe, lie at the heart of the authorities' and courts' decisions, that chose to interpret the laws and regulations governing parenthood in a narrow manner, putting aside values and considerations regarding the parenting rights of persons with disabilities.
After briefly describing Ora's case, I will examine disability rights theories, and various issues regarding parents with disabilities. I will discuss technological and legal developments, and claim that all these point in one mutual direction, the promotion of rights and opportunities for parents with disabilities. Finally, I will show how in Ora's case, disability prejudice and discrimination, rather than claims regarding genetic (dis)connection, led to the final result. And, as the rights of a disabled mother were not promoted, Ora was left childless.
I would like to finish the introduction with a few words regarding surrogacy. The use of women's bodies to fulfil parental wishes can in itself be considered a violation of human rights, and thus create a conflict between one person's right to parenthood, and another person's rights, such as dignity and health. This is especially true when surrogacy becomes industrial, and involves transactions of bodily functions and fertility of women from developing countries, in order to supply parenthood demands in other countries. The debate and dilemma regarding these aspects of surrogacy are beyond the scope of this paper. 1 In Ora's case, the surrogate mother was her relative, and acted altruistically. However, neither our representation of Ora's case in court, nor this article, come to support surrogacy as an easy or common solution in the field of disability rights.

Facts of the case and decisions of the courts
Ora, a woman with muscular dystrophy in her late 40s, wished to become a mother. Due to her disability, she wasn't able to conceive or carry out a pregnancy. She tried to apply for surrogacy, regulated by the Israeli surrogacy law,* but was rejected, since the law only considers heterosexual couples. Prior to this rejection, and as a part of the law's requirements, Ora's parental capacities were evaluated and approved by an authorised psychologist.
Following this, Ora tried an "out-of-country surrogacy process". † Ova were taken from her, fertilized with donor sperm and implanted within a surrogate in the US. The process failed and the doctors refused to repeat it, due to its grave implications on Ora's health. Ora knew that her chances to adopt, both in Israel and abroad, were nonexistent, since the laws and regulations governing adoption give priority to "healthy couples". ‡ Ora then turned to her last resort. She bought an ovum from a woman outside of Israel, one of her friends donated sperm, and her relative agreed to be the surrogate mother. The conception process was carried out in an Indian clinic. Such a process does not match the requirements of the Israeli surrogacy law, but resembles the "out-of-country surrogacy" process, an act initiated by many individuals without asking for prior state consent, which is socially accepted in Israel and legally approved by its courts. The courts grant parenting status, and thereafter, citizenship, to the babies that are born as a result of the process, relying on legal constructions regarding the formation of parenting, and mainly on genetic connection between the parents (or one of them) and the baby. The main differences between Ora's acts and most "out-of-country surrogacy" processes are, that the persons who donated genetic material were not Ora's life-partners, and that the surrogate did not deliver the baby abroad, but returned to Israel after the conception.
Before the birth, Ora turned to the state and asked to be registered as the mother. When the state refused, Ora filed a legal suit claiming motherhood. § The baby was born while the judicial process was just beginning. She was taken under the custody of the welfare services, and put in foster care.
The motherhood claim was rejected by the Beer-Sheva family court, ¶ and appeals to the District Court,** and the Supreme Court, † † were rejected as well. The verdicts stated that the baby was not conceived according to the ways permitted by Israeli law, and emphasised the lack of genetic connection between Ora and her. The courts expressed their concern that granting Ora's wish would result in a "slippery slope" for a "children industry" and trafficking, even though they stated that in this case no such worry arises. ‡ ‡ The courts finally noted that the legislator, and not the court, should enable such parenting process, ignoring the judicial created "out-of-country surrogacy". Ora's disability and its implications on her parenthood were hardly discussed. After Ora filed her appeal to the Supreme Court, the "Headquarters for the Disabled's Struggle" NGO, represented by the Bar Ilan University Disability Rights Clinic, § § filed an Amicus Curiae, aiming to shed light on Ora's disability as a central issue. Our first argument was that it is due to her disability that Ora cannot have children in any of the "acceptable" ways, and therefore, denying her from pursuing other means, is not a neutral, but a discriminating act. Our second argument was that negative and suspicious perceptions regarding parents with disabilities lay at the heart of the state's and courts' decisions.
The Supreme Court, while rejecting Ora's appeal, ignored most of the Amicus claims. Only Hon. Judge Melcer mentioned disability rights in his verdict, recognising the normative void that prevents persons with disabilities from realising parenting rights, and called upon the state to amend the existing laws. Following the court's decision, the baby's adoption process began.

Ora's case and disability rights
Disability theories Ora's claims regarding parenthood rights are rooted in Disability Rights theories, mainly theories regarding the rights approach 2,3 and the "social model of disability". These approaches, which form part of the "disability studies" theory body, shed light on the deeply rooted discrimination and exclusion of persons with disabilities. They emphasise the nature of disability not only as a personal and inherent trait, but as an outcome of social construction, cultural assumptions, and discriminatory practices and norms. Those, and not merely the physical or mental impairment, are the disabling barriers that persons with disabilities face. The role of society, which failed to form an inclusive, accessible, and prejudice-free space, is to remove those barriers and let persons with disabilities participate in all life fields. 4 Those theories reject eugenic approaches, mostly common at the end of the nineteenth and well into the twentieth century, aiming to eradicate persons with disabilities. 5 They also criticise medical and individual theories, widely accepted throughout the twentieth century and until today, which focus on the medical and tragic aspects of disability, 6 without regard to its interaction with the surroundings. 7 An important outcome of the social model and the rights approach is the concept of accommodations, acknowledging that in order to promote equal rights, it is not enough to enforce classic anti-discrimination, but rather make the relevant changes that will allow persons with disabilities to meaningfully participate.
While acknowledging the social model as a central disability studies theory and a platform for accessibility and accommodations, other theories emphasise the importance of the individual, physical, and psychological aspects of disability, and the unique experiences that disability entails. According to those, one's disability cannot be attributed only to the impairment's interaction with the surroundings, and should be investigated relating to its individual-psychological aspects, as well as to its contribution to the formation of communities and cultures. 8,9 her theories refer to the ongoing, ever-changing and unstable aspects of disability, emphasising the need for a universal approach. Such approach acknowledges that one's disability is subject to change, and thus can appear or and disappear, dependent on time, setting, and relationships. 10 Therefore, almost everyone would experience disability at some point in their lives. 11,12 These theories seem much relevant to parenthood, as an ever-changing relationship, calling for different abilities at different times. The need of parents, with and without disabilities, for assistance, is universal. Parenthood might also set a perfect example of interdependence, where both parties (parent-parent, parent-child, parent-other caregivers) are depended and depend-upon, at the same time. 13 Parents with disabilities Throughout history, disabled parents' rights were violated. At the first half of the twentieth century, the harshest form of discrimination, sterilisation, was still legal in both the US and some European countries. 14 Negative opinions, stigmas, and discrimination still prevail, through different forms of sterilisation and forced abortion, high rates of children who are put up for adoption or foster care, discrimination in custody proceedings, denial of access to birth and adoption services, and lack of awareness of the needs of parents with disabilities, § § Iris Finkelstein and I represented the Headquarters, with our students, Shiran Knafo and Roy Cohen.
leading to inadequate support, and intervention only at times of crisis. 15 Findings regarding women with disabilities, in particular, reveal denial and ignoration of their sexuality, lack of reproductive healthcare, pressure to abort, and lack of accommodation. 16 Therefore, the physical and mental hardships deriving from the impairment are intensified by the need to overcome social barriers such as stigma and negative attitudes that draw a conceptual gap between the "normal", thus, able, parental functioning, and the dependence that is inherent to the concept of disability. Such parenthood also contradicts neo-eugenic practices and theories. 17 For instance, one of the most problematic aspects of being the child of a parent with a cognitive disability was found to be society's negative attitude towards their parents. 18 While the need for physical and mental support, at times, is unquestionable, researchers have also found substantial strengths regarding parenting with disabilities. The experiences of children were found to be mixed, constituting of both hardships and advantages. 19 The parental difficulties and social barriers intensify when the parent is a woman, a mother, like Ora wished to be. Motherhood is one of the core elements of "pro-natal" Israel, and the choice not to become a mother is considered peculiar and even vexing. 20 This demand does not apply to women with disabilities, who are prone to be needing assistance in child-bringing and childrearing. Therefore, women with disabilities live under mixed messages: as women, they are expected to become mothers in order to live a full and productive life, but at the same time their disability is characterised by the inability to perform "normal" motherly duties, both in biological terms of fertility and social terms of raising children. 21 And, since women's role in childbirth and child-rearing is both unique and traditionally more influential than men's, disabled mothers are subject to negative attitudes, much more than disabled fathers. 22 The equal rights law and the UN convention The Israeli Equal Rights for Persons with Disabilities Law (5758-1998), 23 as well as the UN Convention on the Rights of Persons with Disabilities, ¶ ¶ portray the notion of equal rights and accommodations in their words and spirit. 24 Their legislation, on the grounds of the existing antidiscrimination laws, indicates the need for unique tools to achieve equality within the disability field. 25 The notion of accommodation is highly stressed as means to ensure equal participation in society, realising that the existing so-called neutral state is actually discriminatory. 26,27 While the Israeli law does not mention family accommodation in particular, article 23 of the UN Convention focuses on parenthood and family, calling to promote equal rights in this field, through physical and bureaucratic accommodations of the relevant services. 28 The article calls on the States Parties to take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood, and relationships, on an equal basis with others, so as to ensure that their right to marry and to found a family, on the basis of free and full consent, is recognised (art. 23(1.a)). The article also mentions the right to decide freely and responsibly on the number and spacing of one's children, to have access to reproductive and family planning information, and to the means necessary to enable one to exercise these rights (art. 23 (1.b)). In addition, the States Parties should ensure that persons with disabilities retain their fertility on an equal basis with others (art. 23(1.c.)).
Article 23(2) stresses the States' duty to render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities. Article 23(4) asks the States Parties to ensure that children shall not be separated from their parents against the parents' will, except when such separation is legally determined necessary for the best interest of the child. According to this article, in no case shall children be separated from their parents based on disability alone.
As we claimed in Ora's case, the implementation of the Israeli law, disability rights theories, and especially article 23 of the CRPD, should have led to parenthood accommodations: first, Ora should have been given a "bureaucratic-legal" accommodation, recognising and approving the surrogacy process that took place, as her only means to exercise her right to become a mother, 29  Regrettably, article 23 was mentioned only by 1 (out of 7) Supreme Court judges. In his verdict, Judge Melcer described the article only as a source of inspiration for further legislative reform, and not as an independent source to promote Ora's motherhood rights. It seems as if the Supreme Court, which takes part in promoting disability rights discussion regarding others issues, such as labour and community, prefers to be silent when disability rights regarding parenthood are at stake. 30 This is largely due to the social obstacles mentioned above, and the complex discussion regarding parents with disabilities and their children.
It should be noted that alongside the duty to promote equality in the family field, article 23 contains concepts such as "free and full consent"; "decide freely and responsibly"; "family planning"; and "best interest of the child". While those crucial rationales serve as important checks and balances in the discussion on parenthood, there is a concern that when parents with disabilities (especially cognitive and mental disabilities) are concerned, the state and courts might interpret the disability, a priori, as negating those concepts and rationales.
Yet to be interpreted by the legislator, local courts, and the UN committee, it is too early to know to what extent the article would secure parenthood rights and opportunities for persons with disabilities. 31

Legal parenting and reproductive technology
Another universal source for parenthood accommodation lies in the laws and verdicts that regulate the formation of parenthood in Israel. Parenthood is not a natural, but a legal status, usually granted on a biological and genetic basis, to the birth-giving mother and her husband or partner. Parenting legal status can also be obtained through legislation and court verdicts to persons with no genetic or biological connection to the child, in cases of adoption, surrogate processes, ovum donation, or legal presumptions. 32 In Israel, in recent years, another legal parenting status has emerged through court verdicts, recognising the spouse of the genetic parent in "out-of-country surrogacy" proceedings, as the legal parent. The parenting status is not given to any partner of the genetic parent, but to the person who was his/her partner in the "child making" phase, putting emphasis on elements of intent and consent to be that specific child's parent. We find a US court decision resembling this legal analysis in the case of Buzaanca, 33 when, during a process of divorce, the court granted parenting status with no genetic or biological connection, on the basis of intent alone. 34 Therefore, two crucial elements of parenthood rights discussion in Israel are the diminishing importance of the genetic connection, and the rising importance of intent.
The development of non-genetic parenting is made possible due to sophisticated reproduction technologies. Those technologies, initially intended to promote genetic offspring, are now widely used to achieve a different, and even opposite, goal of non-genetic parenting, 35 putting the state and courts in an awkward position, as they stumble after the technology with no concrete rules to follow. 36 In such cases, decisions are usually made based on moral views and general principles, and the interpretation of the facts into legal categories is much affected by the decision-maker's view of what constitutes an "appropriate" result. 37 This is exactly what happened in Ora's case. Due to negative conceptions of disabled motherhood, the court overlooked two crucial elements: principles of equal rights and accommodations for persons with disabilities and their implication on parenthood; and the developing legal recognition of non-genetic parenthood and parenthood by intent. Therefore, in the cross-section of reproductive technology, disability and parenthood, the state's and courts' decisions reflect negative and discriminatory opinions about parents with disabilities. I do not claim that the state has acted maliciously. I have no doubt that the decisions were based on intentions to keep social order and the best interests of children. Nevertheless, I claim that their decisions indicate stigma, maybe even a subconscious one, against parents with disabilities.
Discriminatory opinions in Ora's case I base my claim on five grounds.
The first ground concerns theories of equal rights and accommodations for persons with disabilities, according to which society should make the appropriate changes in order to allow them to participate in all life and social spheres. Therefore, Ora's inability to become a mother, either through natural birth, in-state surrogacy or adoption, should have led the state to form accommodations that would grant her parenting status, by implementing and adjusting existing legal principles such as non-genetic parenting and parenting by intent.
It has long been recognised that so-called neutral norms can, in practice, lead to a discriminatory result. 38 In Ora's case, the state and courts failed to comprehend that denying parental status in this scenario, will have greater impact on persons with disabilities such as Ora's, who are much more likely to use reproductive assistance, and have no other way to become parents, than it will have on the rest of society.
The second ground concerns the state's and courts' problematic attitude regarding the genetic parenting element. This argument is twofold. First, in this case the courts chose to ignore the widely diminishing importance of genetic parenthood, and the legal recognition of parenthood by intent. Just like the spouse of a genetic parent at the time of the baby's "making", who is legally recognised as the parent, Ora's intent was the base and reason for the baby's birth. Without it, the baby would simply not exist.
Second, while basing the decisions solely on the grounds of lack of genetic connection, the state and courts found no hardship in deciding that the baby would be put in foster care and later adopted by people who, naturally, have no genetic connection to her. The state preferred this solution to the one suggested by the surrogate mother, who is Ora's relative, to let her raise the baby, if Ora's request was denied. This implies that the lack of genetic connection was not the true reason for denying Ora's request, and that the state actually wished to keep Ora and the baby apart.
The third ground for my claim, lies in the nonlogical nature of the decisions regarding child trafficking and the best interest of the child. In this case, a baby already born was taken away from the woman who initiated her birth, a woman who was found adequate to be a parent. This was done in order to prevent future cases of "making" children with no genetic connection, since, according to the courts, such actions can constitute child trafficking and negate the best interest of the child principle. This argument is problematic: first, it contradicts legislation and rulings that acknowledge non-genetic parenthood; second, it ignores the fact that Ora's actions were never defined as illegal, in a state that legitimises "out-of-country surrogacy" processes (which are not conducted according to the Israeli surrogacy law), on a daily basis; third, the courts assured that in this case the fear of child trafficking doesn't arise. It would make more sense that, if it is concerned about child trafficking, the state should form regulations that would specifically define them and prevent them. Fourth and most important is the theoretical discussion of the "child's best interest", regardless of the fact that the child was already born, and without considering her best interest, given she will, anyway, be raised by a family with no genetic connection to her.
Under these circumstance, giving her up for adoption is merely a punishment for Ora (maybe for taking the law into her own hands, acting without asking for prior consent), with no benefit for the child. It is hard to believe that in such a case no discussion was held regarding the best interest of the specific baby, and that her connection to the surrogate mother, one that would bear substantial weight in any other case, was not even considered.
The issues of parental capacity and the best interest of the baby are the focal point of any adoption case, but in this case, they were never openly discussed. One could speculate that the state did not have strong formal arguments regarding Ora's incapacity (the district court even stated in its verdict that Ora would be a good mother), and did not want to be portrayed as holding negative opinions regarding persons with disabilities. Yet, it would probably be safe to assume that Ora's single, disabled motherhood, one that would require much physical assistance, did not "fit" the state's notion of the best interest of the baby.
The fourth ground for my claim, lies in two actions taken by the state early in the process, that reflect discriminatory attitudes towards Ora as a parent with a disability. As explained above, the baby was taken from the hospital and put in foster care. The legal ground for this action was article 12(c)(1) of the Child Adoption Law, according to which a child can be separated from their parents, without court order, whenever the social services find it necessary in order to prevent immediate harm. One cannot but wonder, what was the claimed harm in Ora's case? Later along the case, the state has claimed that the baby was actually "parentless", and defined the harm as growing without knowledge of one's genetic origin. If this is true, then it cannot possibly be the ground for taking away the baby and placing her with a different family, who hold no knowledge about her genetic origin. It seems much more likely that the perceived harm actually lies in Ora's disability.
In addition, in a court session held a few days after the labour, the state clearly stated that Ora's physical incapacity should be taken into account, since most of her parenting duties would be done "by proxy". This was the one and only time where the state revealed, openly, its concern regarding Ora's parental capacity.
The fifth ground for my claim is the answer to the question as to whether the state and courts would act differently in a similar case, where no disability was involved. The general rulings in the field of genetic parenthood in Israel deal with acquiring legal status and citizenship. In none of the numerous cases that were debated, before and after Ora's case, was there a child separated from the person claiming to be her parent. Never was it claimed by the state before, or after, that a child was born "parentless", like Ora's baby.
Moreover, four months after Ora's verdict, the Supreme Court issued an interim verdict in a case of out-of-country surrogacy, where a suspicion rose regarding the genetic connection of several babies to the people who claimed parental status over them. This specific ruling did not regard the parenting status directly, but the agency's duty to let the police look through its files in order to investigate the genetic connection. In the verdict, the option of separating the children from their parents was not even raised, let alone discussed, and the answer to the question of whether such actions are illegal, was defined by the court as "complex". *** Yet another decision approved the request of a couple who lost their son a few years before, to use his sperm in order to "make" a baby using a surrogate, and acquire parenting status over the child, with no direct genetic connection. † † †

Conclusion
The concepts of parenthood and disability are, many times, conceived as contradictory. This is magnified by public ignorance of parental hardships, suffered by parents with and without disabilities.
As much as the hardships facing parents with disabilities derive from the physical or mental impairment, they are also a product of the way legal parenthood is constructed, and of social aspects such as obstacles and stigmas against parents with disabilities.
Disability rights theories stress society's role in creating the disability, and the need for accommodations in order to achieve material equality. These should be implemented in every life field, including parenthood.
When we consider the universal aspects of disability, we might acknowledge that parents, with and without disabilities, need and should receive support. This will help us form a comprehensive approach towards parenthood in general, and diminish situations such as anxiety, tension, and post-partum depression. 39 As a result, the need of parents with disabilities for support, might not be perceived as illegitimate. 40 In the cross-section of these disability theories, advanced reproductive technologies, and legal parenthood, such as the diminishing importance of genetic parent-child connection, and the rising importance of parental intent, lies the potential for barriers removal and accessibility for parents with disabilities.
Regrettably, this potential was not realised in Ora's case, very much so, due to suspicion and negative perceptions regarding her parental capacities, based on traditional views of parenthood and disability as contradicting terms.
represented the "Headquarters for the Disabled's Struggle" NGO, filing an Amicus Curiae regarding disability and parenting rights, supporting Ora Mor-Yosef's appeal to the Supreme Court. Research interests: disability rights, therapeutic jurisprudence, and clinical education.