DISABLED MOTHERING—BUILDING A SAFE AND ACCESSIBLE COMMUNITY
by Jewelles Smith
Disabled mothers face many barriers to their parenting. These include lack of access to affordable and accessible housing and transportation; supports and services that will enable women to maintain custody and access to her children; adaptive equipment to support the unique needs of her family; and entry into shelters when they are fleeing violence.
State and community is inclined to equate a woman’s ability to single handedly run her household with her “ability” to parent her child. A disabled mother has to admit that she is failing on one level or another in order to access supports and services, and once she reaches out for help; she may face losing custody of her children. The difficulty for many mothers is in how to negotiate the process while maintaining dignity and custody of children. Often those who can grant access to services do not consider that with supports in place, a disabled woman can parent her children and manage her household and instead choose to place custody of children into able-bodied partners, even those with a history of abuse and violence, over the mother. Further, the process of accessing resources is exacerbated by poverty.
This paper will address some of these issues by providing an overview of the living situation for disabled mothers, especially those who are experiencing and possibly leaving violence. I will also discuss how even the first stage of access to services and resources can be a barrier to those who are living in poverty and need to access government resources and services. several countries have organization such as DAWN-RAFH Canada that work tirelessly for the rights and safety of WWD. As well, the UN and a handful of international agencies are working to challenge countries to change how they provide services for mothers and their children, and to stop violence and discrimination against disabled women and their children. I will propose ways in which organizations can support changes in policy and communities to end the systemic discrimination against disabled mothers and their children.
Disabled mothers who are experiencing abuse from partners often do not report the violence and do not attempt to leave. Because of the unique situation of these mothers, they often have built a very individual and adapted home environment to live in and parent their children. Unfortunately, leaving an abusive but adapted house can take away a woman’s independence as a mother and leave her vulnerable to loss of custody of her children.
Social Model versus medical model of disability
To be clear about definitions of disability and the ramifications of definition and perception, I will read the Circles Network of the UK definition of the medical and social models of disability:
“The Medical Model is the traditional view of disability. This sees disabled people as passive receivers of service, and the impairment as being the problem. This results in a society that segregates and separates, creating “special” facilities away from community life.
The Social Model sees the person as disabled by society. In this view, the impairment is not in itself a problem, even though it may produce a need for a different set of living requirements. Rather, society’s insistence on segregation in education and services, and the inaccessibility of things such as transport and buildings results in a general prejudice against an integrated community life for disabled people”
In the view of the Social Model, the disabled person is an active fighter for equality, working in partnership with allies, to create a society which is truly inclusive. (http://www.circlesnetwork.org.uk/models_of_disability.htm).
Working from a social model, it becomes clear that by changing an environment that a person with a disability lives and works and even parents in creates a challenge to the medical model where this independent and active lifestyle is not understood to be possible.
Understanding and embracing the social model is key to challenging how disabled mothers are perceived and supported by community and government. If we as a society provide the environment and service options mothers need to care for and mother their children, then we can look beyond the particular disability and see the mother, the very capable mother. A woman who requires an accessible living space is no less able to parent than her sister mothers who do not require those particular services and resources.
What it Takes to Make a Home Accessible:
To understand how a mother’s environment might be adapted, I will give some examples. A woman who has a mobility disability may have lifts she can use to help raise and lower her children into a bath, she may have an adapted crib that can be lowered if she uses a wheelchair, or raised if she has difficulty bending down and lifting. A wheelchair user would have light switches lowered, the kitchen appliances set up to accommodate her ( for example front controls on stoves, lowered counter tops, access for her wheelchair under sinks with the pipes covered so she does not inadvertently get burned). A deaf mother will have alarms that light up when her child cries or screams, a lighted alarm for the doorbell, and an adapted phone such as a TTY phone which allows her to text her message and receive incoming messages in text, there are several other variations of phones, blackberries, and computers used by deaf women. A woman who has low vision or who is blind will have memorized her home and it will be clear of obstructions. Other items a mother might need are adapted slings and strollers, as well as appropriate space that is safe for her and her child. As well, depending on her disability, her home may be one floor or have elevator or lift to help her access bedrooms and laundry. This is not an exhaustive list by any means just a few examples!
If a woman has to leave her house because of violence, she needs to have a similar environment to go to so she can continue to effectively parent her child/ren. It is very expensive to relocate and re-adapt an environment, and it takes time as most rental units are not adapted and those that are labeled as such will not be individualized for parenting. Further, many adapted units of social housing are for single disabled adults not for disabled parents who have custody of their children.
Accommodating Disabled Mothers—Shelter Survey Results
The NAAS Survey:
I will offer a few statistics and some information on violence against women and specifically violence against women with disabilities. In Canada it is estimated that 15-20% of the population has a disability. More than 54% of these are women. In 1988, DAWN Canada showed that more than 40-63% of disabled women had experienced abused. Because it is also shown that violence against women escalates during pregnancy and after childbirth, we are very concerned about disabled mothers who are experiencing this, often in isolation due to their very insular environment. DAWN-RAFH Canada is concerned that women who are experiencing violence whether it is at the hands of their partner, caregiver, or parent have a safe environment to go to, such as a shelter or transition house.
DAWN-RAFH Canada has been conducting a national survey of women’s shelters to access how accessible they are for women with disabilities. In October 2007, DAWN-RAFH Canada board members and staff met and developed the National Accessibility and Accommodation Survey (NAAS). The survey invitation was mailed out to 369 shelters in June 2008. To date, this survey has been completed by more than 10% of shelters across Canada. That is 43 shelters. It is the goal of DAWN-RAFH Canada to have 50% or more of shelters in rural, urban, northern, and aboriginal communities complete the survey for phase II of this project.
The survey was designed to allow a Shelter to do a complete audit of its facilities while providing Shelter administrators and managers with the information and resources to make improvements and set objectives towards a goal of 100% accessibility. DAWN-RAFH Canada will use the outputs from the survey to provide online and printed toolkits for ongoing use by women’s shelters and to develop other resources for increasing accessibility to shelters for women and girls with disabilities. Ongoing training and development for Shelter and outreach workers is another important part of this initiative.
Within the survey, there is a series of questions on how shelters are or are not able to accommodate disabled mothers and their children. The survey is specifically designed to be provocative in the questions so that shelters that are not accessible become informed on how they can create an accessible environment for disabled mothers. Knowing how to ask women what they need to maintain their ability to parent is the first step in becoming accessible.
Many shelters commented that they were willing to accommodate disabled women and their children but were restricted by finances. When asked if shelters had done renovations recently to accommodate women with disabilities, 12 out of 22 who had completed major renovations stated it was to accommodate disabled women. In their comments 6 shelters acknowledged that funding was a huge barrier to making their spaces more accessible. Further, several shelters stated that a portion of their shelter was wheelchair accessible and/or a portion of the rest of the space. One shelter wrote what sums up many experiences we have heard: “We are accessible in a limited way and take whatever opportunities given to improve our accessibility, however we haven’t had the resources to do as much as we’d like”. It appears that many shelters are unable to be proactive but rather they are reactive to a situation when it presents itself if they are able to access funding and resources. This is especially problematic for mothers who are leaving violence and require the space to be ready for them and their children.
There is clear evidence emerging that women with disabilities who are parents (sometimes with children with disabilities) are the least served by the present model of emergency shelter. Shelters have told us that government workers have recommended returning custody of children to the able-bodied parent, who is often the abuser, rather than provide funding to accommodate mothers with disabilities in shelters. This is one example that was shared with DAWN-RAFH Canada on the survey.
We sheltered a [disabled women] with a 5 year old child. We were able to get services for her but those services would not extend to the child. So they would come and bath her but they would not bath him. Although, we are wheelchair accessible we still have 3 floors, so the child would run about the house and the mom had a hard time keeping track of him. We requested support for the mom, the response to the shelter was that the child will be place [sic] with the able bodied parent (the abuser) therefore; we provided the support by putting more staff on to assist her and the child. Our ratios are 2 staff to 35 women and children, so it was necessary for us to increase staff. The woman was with us for 2 months. [there is] Very little help from agencies that assist people with disabilities.
Although the shelter was not able to access outside services and funding to support the mother, they found ways to manage the situation and ensure that the mother and child were both safe and cared for. What DAWNB-RAFH Canada is concerned about is what happens to the women who do not enter shelters because they are not presently accessible? They might not know how accommodating, how creative a shelter might be willing to be on their behalf if the mother were to come in. If the woman or if an advocate were to call a shelter and ask if they were accessible and be told “no”, we are concerned that the woman might think that she was left with no option but to remain where she is.
According to a 2008 report by the YWCA:
“Judges in BC don’t have to consider your husband or partner’s violence toward you when deciding child custody and access. Some judges might not think that the abuse seriously affected your child, or they might think that because you and your husband or partner don’t live together anymore it isn’t a problem. You should always tell the judge about any violence, but there is no guarantee that doing so will make a difference to what the judge decides” (18).
Further, the YWCA recommend that women who hope to maintain custody of their children when leaving an abusive relationship should take the children with them, being careful to follow legal instructions. Not only do judges not see abuse against a mother as reason to restrict the father’s access, many other state organizations, and ministries do not financially support mothering when a disabled woman does leave an abusive home, DAWN-RAFH Canada has heard countless reports from shelter workers that are told by ministry workers that children can return to the other often abusive parent. They state that they do not have funding to support “mothering”, but they sometimes fund care workers for the mother. DAWN-RAFH Canada is very concerned that women will stay in abusive relationships and risk further harm and possibly death rather than risk losing custody of their children.
Very few shelters have adaptive equipment for parents (such as cribs, secondary rooms that are accessible for parents with their children, and bathing supportive devices). Moreover, structures with multiple floors often have only one that is adapted, allowing children to run throughout the house with their mothers unable to follow after them. Some shelters do not allow children to stay at the facility and this puts further strain on all mothers who are seeking safety from violence and poverty. This is an area DAWN-RAFH Canada would like to pursue further to discover how mothers with disability are coping when facing violence, loss of home, and homelessness.
Part 3 of the NAAS study asked participants to answer 18 questions on parenting support. The focus is on assistive devices, training and services for disabled mothers and their children. When asked if they offer parenting programs, 51.2% (22) answered yes and 48.8% (21) answered no. With regard to specifics of the programming: 29.7% (11) stated that they include the needs of disabled parents in their class and 38.9% (14) offer counseling on pregnancy. 92.7% (38) were interested in receiving material from DAWN-RAFH Canada about how to accommodate disabled mothers.
There were 15 questions asked that were specific to how shelters were equipped to support disabled moms. On whether the shelter provided adaptive parenting equipment: 37 shelters did not with only 3 stating that they did have some equipment. However, 34 shelters stated that they were able to assist a mom with baby care such as feeding, bathing, lifting, carrying, and dressing/diapering if there was a need while 8 shelters answered that they were unable to assist. Only 2 shelters had allocated funds in their budget towards adaptive parenting equipment. Most shelters are not equipped with adaptable bathtub, diapering table, stroller, transfer sling, or crying/noise alarm to alert deaf mothers that their infant is crying.
All that said, the creative and collaborative way that shelter staff have worked with women to accommodate women’s particular needs is commendable. The majority of shelters have stated that when a woman with particular needs approaches them, they attempt to accommodate her. Many have used the information on the survey to examine how they can make their shelters safer for women and have requested more information on accessibility. Small but specific changes make it possible for women with disabilities to be independent during their stay. Some examples include: changing door handles to be more easily managed by women with dexterity and mobility disabilities, putting door bells lower so that women in wheelchairs can reach them, making TTY phones a priority, clearing spaces of object that restrict access to hallways and rooms, installing appropriate ramps; installing call bells in washrooms and bedrooms in case a woman should fall or need assistance; installing alarms that light up for women who are deaf and hard of hearing, and providing websites and materials about shelters in accessible formats with information about how the shelter can accommodate women with special needs listed.
The lack of funds seems to be a major hurdle for shelters to adapt their spaces. Although having ramps, open spaces, adaptive equipment and TTY phones will greatly improve the accessibility of a shelter, first there has to be an understanding around what accessible means and how services and behaviour are the first step to making a space accessible. Shelters that are accessible or that have modifications in place as well as programs have to be able to reach the population that can use the resources. This would involve educating community outreach organizations, police and social workers, as well as the women themselves. If disabled women felt that they could go to a shelter and find a welcoming and safe space, they would be more likely to reach out and leave abusive situations. As it stands right now, most large surveys on domestic and other violence and on shelters do not include information about disability and violence or on the resources that women can turn to.
Other Community Resources
Another way we that disabled mothers face discrimination is in how resources are applied for. If you are a mother applying for a rental unit, childcare subsidy, welfare, community programs, and a myriad of other resources, you will have to fill out a series of forms. For a mother who has a dexterity disability, learning disability, cerebral palsy or brain trauma, as well as women with low vision or who are blind (and this is not an exhaustive list)….taking a pen to paper is an impossible task. Many women have adaptive equipment to help them fill out forms, some require assistance, and others are looking for ways to maintain their dignity and independence as they apply for resources. It is imperative that application forms and all resources be offered in alternative formats that are accessible to disabled mothers. Many times, it is as simple as offering online writeable application forms that are also compatible with adapted computer programs. As well, women need to know where they can go to have trusted assistance if they do not have such resources (ie a computer). In BC, for example, government funding is ever changing so in one fiscal year a company may have a contract to provide assistance and advocacy and the next year the contract is not renewed. Further, in BC, standard forms are regularly changed and often very complex, sometimes arriving as very poor photocopies, this creates confusion for women and for community and volunteer organizations.
As I have demonstrated, disabled mothers face many barriers and challenges first to challenging the societal prejudices towards them. Even mothers who have set up their environment face difficulties in accessing resources and funds as they must fill out countless inaccessible and often onerous application forms that more often than not must be filled out annually. Mothers face challenges to keep their homes up to date with the growth of their children as well as their own personal health changes as they age and their disability changes. Most difficult is the situation for mothers leaving abusive partners and their adapted homes. These women should not have to decide between custody of their children and their very lives! DAWN-RAFH Canada is working hard to change views on disabled women and mothers. I look forward to your questions.