Accessibility for parents with disability: is it reality or fantasy?

Abstract

The right for persons with disability to start a family is enshrined in Article 23 of the United Nations Convention on the Rights of Persons with Disabilities. The same convention also affirms the right to accessibility for persons with disability. In 2021, Malta passed the United Nations Convention on the Rights of Persons with Disability Act making the UNCRPD part of Maltese legislation. Notwithstanding these rights, persons with disability who decide to start and have a family still encounter a number of obstacles when accessing services and venues related to parenthood. Parents with disability find it harder to access services at every stage of parenthood, from family planning to pregnancy to maternity to child-rearing. Disability Equality Training for healthcare providers and other service providers working in this sector and full accessibility to all areas will ensure a more positive parenthood experience for parents with disability in Malta.

Keywords:

• Parenthood
• accessibility
• disabled mothers
• family

Introduction

In this article, I aim to discuss the issue of accessibility for parents with disability in the process of exercising their right to start a family, giving birth to a baby and in raising their children. Before embarking on the rest of the discussion, I would like to state that whilst I acknowledge that non-binary people and trans men can give birth and may face intersectional discrimination when exercising their reproductive rights, this paper will focus on research about parents with disability in the general context of accessibility and on disabled women with female biological characteristics in the context of reproduction. The reason for this decision is because I will be doing neither women with disability nor non-binary people and transexual men any justice by incorporating everyone under one umbrella term within the context of being pregnant and giving birth since their separate experiences require much more space than is available for this publication. Another reason for this decision is that most of the research I will be referring to specifically refers to ‘women with disability’ in the context of reproduction.

The right for persons with disability to start a family, including the right to decide freely and responsibly when to have a child, as well as to having access to age-appropriate information regarding reproduction and family planning is enshrined in Article 23 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The same article also affirms the right to persons with disability to assistance in performing their child-rearing responsibilities in all spheres of life. Article 9 of the same convention also ensures the right of access to venues, properties, facilities, and provision of goods and services for persons with disabilities which is imperative for persons with disabilities to be able to exercise their rights as parents.

Malta, a small island centrally located in the Mediterranean Sea and a member of the European Union, ratified the United Nations Convention on the Rights of Persons with Disabilities and the Optional Protocol in 2012. However, long before that, the rights to accessibility for persons with disability were also enshrined in the Equal Opportunities Act (Cap. 413) which was passed by parliament in 2000. In August 2021, the United Nations Convention on the Rights of Persons with Disabilities Act was passed in parliament taking the place of the Equal Opportunities Act of 2000 as the legislation to make provision for the possibility of civil claims alleging discrimination on the basis of disability. Research about disability and disabled people in Malta is not extensive and research on disabled parenting in Malta is even more limited.

Further emphasis on the right to have a family and the right to accessibility for persons with disability are highlighted in the European Disability Strategy 2021–2030 (European Commission, 2021). The strategy reports that very often persons with disability do not receive the tailored support needed in exercising their reproductive rights and thus calls on Member States to ‘improve access for persons with disabilities to the entire healthcare portfolio including sexual and reproductive healthcare…’ (p. 20). In addition, the same strategy, in its very second article, highlights the importance of accessibility ‘…to the built and virtual environments, to information and communication technologies (ICT), goods and services, including transport and infrastructure…’ (p. 6) and affirms that accessibility to the above is a vital prerequisite for the full participation of persons with disability. The strategy also highlights the importance of having access to culture, sport, leisure, recreational activities and tourism for persons with disability; activities which are all considered very important for the development of children and taken for granted by the majority of non-disabled people when spending quality time with their children. The rights to parenthood (Objective 6) and the rights to accessibility (Objective 4) are also highlighted in Malta’s consultative document for the ‘2021-2030 National Strategy on the Rights of Disabled Persons’ (Government of Malta, 2021). Notwithstanding these rights which are enshrined in legislation and strategies, both at local and EU level, persons with disability who decide to start and have a family still encounter a number of obstacles when accessing services, facilities, venues and activities related to parenthood (Azzopardi-Lane 2021; Callus and Azzopardi-Lane 2016).

From the very point of planning to conceive

Parents with disability find it harder to access sources of support during family planning, pregnancy, maternity and child-rearing for reasons such as inaccessible environments, negative attitudes and structural disadvantages (Parchomiuk 2014). Although parents with disability experience a lack of accessibility when it comes to parenting their children and accessing services or venues related to being a parent, women with disability tend to experience much more than just lack of accessibility. Women with disability tend to also experience judgement and negative attitudes towards them, including assumptions about them and their lives, when getting pregnant or even at the mere mention of saying that they want to have a child (Lappeteläinen, Sevón, and Vehkakoski 2017). The experience for Maltese female participants taking part in Callus’s and Azzopardi-Lane’s (2016) study is very similar. The participants recounted how whilst pregnant, medical professionals would often address the people accompanying them at their hospital visits rather than addressing the mothers with disability themselves.

In addition, women with disability also experience judgements on their ability to parent and as a result very often they are not offered fertility services or they are otherwise encouraged to terminate the pregnancy or give the baby up for adoption. Although in the US alone, it is estimated that over 160,000 women with chronic physical disabilities become pregnant each year and that 9.4% of pregnancies in the UK are to women with disability, there is still a significant gap in the research and evidence available about women with disability and their reproductive care (Francis, Silvers, and Badesch 2019). As a result of this huge gap in research, Silvers, Francis, and Badesch (2016) claim that women with disability are often subject to their pregnancies being labelled as high-risk even when their impairment or condition are entirely unrelated to their gynecological functions.

Research carried out in Europe and the US shows that a number of services related to pregnancy do not always include or accommodate access requirements for women with disability (Iezzoni et al. 2015; Malouf, Henderson, and Redshaw 2017; Mitra et al. 2016). The situation is not very different in Malta. The lack of accommodations include accessible parking at gynecological and obstetricians’ clinics, accessible facilities, accessible equipment such as weighing scales for mothers who use a wheelchair and height adjustable examining tables, and accessible information particularly for mothers with a visual impairment, hearing impairment or an intellectual impairment. The Covid pandemic has only exacerbated this situation. For example, in Malta, parenting courses for parents-to-be have moved online and although this means that these courses might have become more accessible for parents with a mobility impairment, they might cause inaccessibility issues for parents with a hearing impairment or intellectual impairment. Some mothers with a physical impairment also find that in the maternity environment, that is in the few days before and after giving birth, some basic facilities in hospitals such as showers, toilets and baths are inaccessible to them. Unlike non-disabled mothers, mothers with disability often have to take their own assistive equipment such as a stool, shower chair or commode with them to hospital since such basic needs are often overlooked. This was the case in Malta where a mother with disability had to take her own shower stool in order to be able take a shower at hospital during her stay before and after having the baby since none were available.

As the babies grow, parents with disability living in Malta also start to realize that most of the services and activities aimed towards their children are inaccessible for them. Most ‘mother and baby’ clubs and organized activities for children and parents are held in inaccessible venues with long flights of steps and inadequate parking making such services inaccessible for disabled parents (both mothers and fathers). Other examples include extra-curricular activities for children where a parent needs to accompany the child such as painting lessons, drama lessons etc., venues for children’s parties, and doctor’s appointments. Another example of lack of inaccessibility is the baby changing stations in toilets which are not accessible for parents with disability who use a wheelchair. Baby changing stations are often positioned too high for persons with disability to reach. Travelling with a child is also a cause for anxiety for parents with disability since the majority of accessible rooms in hotels for persons with disability are designed with the intention of only accommodating two people and do not acknowledge that persons with disability can also be parents and thus have children and want to travel with their children.

Accessibility for persons with disability is accessibility for all

Research shows that a minority of women with disability do have positive experiences when it comes to pregnancy, child birth and child-rearing (e.g. Hall et al. 2018) . Most of them cite that a person-centered approach was adopted with their requirements being accommodated on a case-by-case basis. Although this is welcomed, the problem with this approach is that not all parents might feel empowered enough to put forward their needs and requirements at every stage of parenthood and some might miss out on important milestones. With this approach, parents with disability will also have to stay constantly communicating their needs making the experience more cognitively tiring than it might be. The need for support is even greater for parents with intellectual disability who are at a higher risk of having their children taken away from them (Callus and Azzopardi-Lane 2016). Since legislation catering for these rights is in place the onus of responsibility should fall on the service provider.

Stronger representation of people with disability in mainstream informational resources such as brochures for services aimed at parents-to-be and parents will both help persons with disability feel they are represented and break the stereotypes usually associated with disability. Disability Equality Training for healthcare providers in Malta working in obstetric/gynecological departments will also ensure that women with disability receive appropriate services and will minimize any attitudinal barriers they may encounter doing their pregnancy. Disability Equality Training for service providers aimed towards parents in general will also be beneficial. Ensuring physical accessibility of premises and services aimed at parents and children will also ensure that parents and their children have access to these services as everyone else.

Disclosure statement

No potential conflict of interest was reported by the authors.