Disability Studies Quarterly
Summer 2004, Volume 24, No. 3
<www.dsq-sds.org>
Copyright 2004 by the Society
for Disability Studies


Income Assistance (the ODSP) and Women with Disabilities in Ontario, Canada:
Limited Program Information, Restrictive Incomes
and the Impacts upon Socio-Spatial Life

Valorie A. Crooks
School of Geography and Geology
McMaster University
Hamilton, Ontario, Canada
Email: crooksva@univmail.cis.mcmaster.ca


Abstract: Women who live with an illness or impairment are an extremely marginalized and impoverished group of citizens in the province of Ontario, Canada. All too often they lack the resources that would enable them to improve their everyday lives such as employment or simply higher amounts of income assistance. The purpose of this paper is to illustrate some of the complex ways in which one's status as both an income assistance recipient and as a woman living with an illness or impairment that results in disability impacts upon everyday life. In this paper I focus specifically on experiential evidence shared during in-depth interviews conducted with 10 women receiving Ontario Disability Support Program (ODSP) support residing throughout the province of Ontario, Canada. I show how both the restrictive amounts of monies afforded to recipients and the limited amounts of information shared with them about key ODSP aspects such as transportation reimbursements significantly impact upon the women's abilities to move around in everyday society and space, which in turn imposes limitations on both their social and spatial lives.


Introduction

Women who live with illness or impairment are an extremely marginalized and impoverished group of citizens in the province of Ontario, Canada. All too often they lack the resources that would enable them to improve their everyday lives such as employment or simply higher amounts of income assistance. In Canada, women with disabilities are more likely to live in poverty, to have less access to employment and education, to be unemployed, to receive insufficient paid and unpaid assistance and to earn less money than both men with disabilities and women without disabilities (The Roeher Institute, 2001). Those who are unemployed live in an even more marginalized position as they generally face high rates of poverty (Fawcett, 2000) due, at least in part, to the limited income support opportunities available through social policies and programs.

Women with disabilities living in Ontario who are unemployed are generally recipients of some form of social income assistance whether from a contributory benefits program such as the Canada Pension Plan or from a social welfare program like the Ontario Disability Support Program (ODSP). The ODSP is a provincial program that has been in existence since 1998 and provides income through shelter and lodging allowances and employment support through job training, vocational programs, and educational opportunities to persons with disabilities residing throughout Ontario. The monies and services administered through the program are funded by a multilateral agreement between the federal and provincial governments. As of 2001, the maximum income assistance amounts were $930/month (CDN) for a single person and $1417/month (CDN) for a family with two adults with disabilities (MCSS, 2001). These monies are expected to cover all costs pertaining to shelter/board and lodging which includes food, rent, telephone and other necessities. For those receiving this form of assistance, the monies provided through the ODSP program become their only source of income because any form of additional income, earned or gifts, will be deducted from the monthly income allowance. Not only are such monthly incomes limiting, but they also leave many persons with disabilities receiving such social support living below the poverty line, particularly in larger urban centers such as Toronto, Vancouver, and Montreal where the cost of living, particularly accommodations, can be quite high.

The purpose of this paper is to illustrate some of the complex ways in which one's status as both an income assistance recipient and as a woman living with an illness or impairment impacts upon everyday life. In this paper I focus specifically on experiential evidence shared during in-depth interviews conducted with 10 women receiving ODSP income support residing throughout the province of Ontario, Canada. Women with disabilities are the focus of this paper as these interviews were conducted both as part of a larger study investigating the impact of state restructuring on the lives of women with disabilities and as a follow-up to interviews conducted with women with disabilities receiving other types of Canadian income and employment supports. Here I show how both the limited information shared with them about transportation reimbursements, a key ODSP component, and the restrictive amounts of monies they receive significantly impact their ability to move around in everyday society and space, which in turn imposes limitations on both their social and spatial lives. My overall goal is not to generalize the findings and suggest that all program recipients share these women's concerns and experiences; rather, it is to provide an in-depth look into the lives of these 10 women and to start a dialogue about the importance of being a recipient of income assistance when considering the impact of disability, disablement, illness or impairment on a person's daily life and life spaces. In other words, I demonstrate that "income assistance recipient" is a variable worth considering in analyses of the social and spatial lives of persons with disabilities and not simply a descriptive variable listed in a table of participant characteristics.

In the following two sections, I review the literature pertinent to the study and its findings, focusing on the socio-spatial outcomes of disability and the role of social policy in the lives of women with disability. Next, I briefly outline the study methods and techniques. Before discussing the significant findings, an overview of the personal characteristics, such as age, illness/impairment and education of the 10 women, is provided. A discussion follows of the two main interview findings: 1. the impacts of inadequate program information on transportation and travel outside the home space and 2. the socio-spatial isolation that results from both impairment and limited income. The final section offers a discussion of these findings and the implications for policy and policymakers.

Living with Illness or Impairment: What we know about impacts upon socio-spatial life

Much research within the geographies of disability has focused on people's changing uses of space as a result of the presence or development of an illness or impairment. We know that, for example, when a struggle is lost over socio-spatial inclusion, the result may be isolation. According to Marris (1996, p. 9), "illness reminds us that each of us is a solitary unit among other solitary units, and brings home to us the limits of human companionship and sharing." This loneliness and solitude can be experienced in many places of daily life and have different durations. It can occur briefly for employees who experience mobility restrictions and who use ramps and elevators that are not located in the same spaces used by other co-workers. Such loneliness can also occur for longer periods, for example when women with disabilities who cannot get "out and about" experience a decline in social activities, and this can lead to the situation that Imrie (1996) has termed the "prisoner syndrome." A person can literally and figuratively become a prisoner in his or her own home due often to a combination of physical limitations and the inaccessibility of the built environment such as friends' houses, public buildings and private businesses.

Dyck's (1995) research on the changing lifeworlds of women who have developed multiple sclerosis (MS) has highlighted some of these women's changing experiences of everyday life and their varying use of public and private space. She defines the lifeworld as being "the taken-for-granted mundane experiences of daily life as carried out in particular spatio temporal settings" (Dyck, 1995, p. 307) and shows how the lives of women who have developed MS can be interrupted due to changing physical abilities, such as reduced mobility, and changes in how paid and unpaid work has been done over time. Wilton (1996), in his research with HIV+ men, has also found that the experience of becoming and being ill has a significant impact on a person's daily life and poses added constraints on an individual's "daily path". He found that social and public policy had a huge impact on these men's everyday lives and that their access to welfare payments, the amount of financial assistance received, their access to affordable housing, and their abilities to pay for medications were all contingent on how they and their illness were represented in such policies. Others have shown us how impairment affects the abilities of women with disabilities to be involved in everyday Canadian society and space (Laws & Radford, 1998; Chouinard, 1999; Lemon & Lemon, 2003); how people with disabilities struggle to be included in the workplace and labor force (Moss & Dyck, 1996; Kitchin, Shirlow & Shuttleworth, 1998; England, 2003); and even how the built environment itself can impact a person's use of space (Gleeson, 1999; Imrie & Kumar, 1998). All these studies have shown that there is a definite spatiality to impairment, illness, and disability and that the onset of a bio-medical condition or the experience of disability or disablement can have a significant impact on one's ability to negotiate everyday society, including social and personal roles, and space, including the built environment and the spaces of everyday life.

We also understand that impairment, illness, and disability have profound impacts on the social lives and daily interactions of people living with these conditions. Robinson (1990) has studied the "social careers" of people who have developed MS. He defines the social career as the "socially visible operation of a sequence of interactions and their social consequences" (Robinson, 1990, p. 1173), and argues that it may be impacted by changes in social status as a result of being or becoming disabled or chronically ill. He has demonstrated that a person's biomedical condition, and the impairments which develop as a result, can negatively impact a person's social status due to changes in employment status, such as moving from full- to part-time paid labor, or changes in one's level of dependency on social assistance or social programs like the ODSP (Robinson, 1990). Moss & Dyck's (2002) research with chronically ill women has also shown how these women's experiences of illness are linked to their social networks and relationships with groups such as friends and family. Further, Kruse's (2003) investigation into the everyday lives of women living with dwarfism revealed the complex intersection between gender and impairment in women's abilities to maintain a social life and negotiate daily society in desired ways. What such studies have shown us is that the presence of impairment or illness or the experience of disability has a markedly, but not exclusively, social outcome.

The research reviewed above illustrates several important realities about the everyday lives of people living with impairment, illness and disability. What is often missing from investigations of the socio-spatial outcomes of disability is information about the specific role that social policy plays. For example, in their paper about the experiences of people with disabilities and employment programs in west Ireland, Kitchin, Shirlow, and Shuttleworth (1998, p. 790) mention that: "[the participants] argued that the levels of payment whilst sufficient to keep them alive severely constrained their standard of living and restricted their social and recreational life." Thus, they acknowledge the significant role that income assistance plays in the lives of their participants; yet they do not report how these economic constraints were experienced or the specific socio-spatial outcomes. Here I contend that the simultaneity of living as a socially marginalized woman with a disability and an economically marginalized social income assistance recipient creates a situation in which the daily realities of living with a disability can be magnified as a result. Thus, we need to consider the specific socio-spatial outcomes of these two types of lived marginalizations by bringing the role of policy into the fore.

Women with Disabilities & Social Policy

Shriner et al. (1997) suggest that we know little about how social policies affect women with disabilities living throughout the world. They tell us that analyses that place gender at the forefront are important as the support needs of men and women with disabilities are quite different. In this vein, in her review of income support policies for persons with disabilities used by women residing in the United States, Mudrick (1998) suggests that social policies and programs for persons with disabilities are not generally designed to fit women's work patterns and needs, including their roles as unpaid domestic laborers. She goes on to suggest that we must consider women's interests and particular needs separately from those of men with disabilities. In reviewing Canadian support programs for persons with disabilities, Pedlar & Hutchison (2000) contend that the presence of a disability is increasingly becoming thought of as a type of commodity in recently restructured Canadian social policies and that services are being provided in order to realize a person's monetary value as a customer and not in terms of specific needs, such as gender-specific or impairment-specific necessities. Given that, the high rates of unemployment and poverty of women with disabilities will render them poor customers or consumers of social services as they have little economic potential. What these studies show, among other points, is that we must consider the policy and program needs of women with disabilities separately from those of men with disabilities. This is not to suggest that the needs are always strikingly different, but rather it is important to consider the role of gender in making income assistance programs more supportive.

Not only are we beginning to investigate the role of gender in disability policy, but we are also starting to understand some of the ways in which such social policies and programs impact recipients. As Wendell (2001) reminds us, the social constructionist model of disability suggests that it is oppressive policies, programs, and institutions that actually create disabling situations in the lives of people living with illness and/or impairment. She also suggests that social support benefits are deliberately kept low in order to keep women with disabilities living in poverty (Wendell, 1996). Though structures such as social policies and programs may loom large in the lives of women with disabilities, we must also consider the fact that the women themselves are actually active agents enmeshed within this structure. While policymakers certainly hold the "upper hand" in terms of power over these women's lives (Wendell, 1996), the women can do things that can help to shift some of this power to themselves. Acquiring knowledge or information about such policies or programs can inform the women who can then inform others. However, this is not always easy since women with disabilities tend to be a poorly educated group and may lack the necessary resources and skills to seek out such information on their own (Marris, 1996). As the role of the state is changing in the lives of women with disabilities due to recent policy and program restructuring in Canada (Chouinard, 1999; Jongbloed, 2003; Chouinard & Crooks, in press), so too must the ways in which such structures impact the everyday socio-spatial lives of program recipients.

Methods & Analysis

I conducted a total of 10 interviews with women receiving ODSP income assistance benefits residing throughout Ontario between September 2001 and August 2002. A majority of these women were contacted via an e-mail message posted to the DisAbled Women's Network's (DAWN) listserv. A snowball sampling strategy resulted in a total of 11 women who expressed interest in participating in an interview, 10 of whom were eventually interviewed. Phone interviews were conducted with eight of the women and the other two were conducted face-to-face. The interviews ranged in length from approximately 30 minutes to an hour, with an average duration of 45 minutes. Each interview was tape recorded and transcribed verbatim. The data were managed by using Nvivo © and coded by using a combination of free and tree nodes. Following this, the constant comparative method of analysis was employed whereby relationships between two or more nodes were established based on the frequency of their occurrence in the same "conversational cluster" of interview text. The participant names used in the following sections are pseudonyms chosen by the interviewees in order to maintain their anonymity.

Participant Profile: Personal characteristics and backgrounds

The Women's Personal Characteristics

The 10 women who participated in interviews lived quite varied lives. They ranged in age from 22 to 53 years of age and were all of Euro-Canadian heritage. Each of the women interviewed resided in urban centers of various sizes in Ontario. One woman had completed portions of a high school education, five had some sort of post-secondary training, two are currently pursuing an undergraduate degree, two had received college diplomas and one had received a Master's degree. Nine of the women had been involved in full- or part-time paid employment at some point in their lives prior to applying for ODSP. The women's living situations were also fairly similar in that all but two of the interviewees lived in rental units or houses.

Lives with Illness, Impairment, or Disability

The women's illnesses and/or impairments were quite diverse. Five of the women had congenital impairments or illnesses: albinism, low vision, congenital heart disease, blindness and post-anoxia (a brain disorder). The other five interviewees were living with illnesses which developed at different stages of their lives. These included Epstein-Barr, chronic back pain, lupus, arthritis, dissociative disorder, fibromyalgia syndrome and seizure disorder. Many of the women lived with more than one illness or impairment. Some of the women experienced relatively stable ability levels and symptoms of their illnesses on a daily basis, such as in the degree of visual impairment, while others experienced fluctuations in ability level on a fairly regular basis, including an almost hourly change in the case of seizure disorder and fibromyalgia.

All but a few of the women faced physical barriers as a result of the illness experience that limited their daily activities. During Sophia's first few years of receiving ODSP, for example, she literally could not leave her house without being escorted by another person because of the severity of her seizures. Marlene had suffered from chronic back problems her entire life and after developing fibromyalgia, she no longer had the physical stamina required to engage in paid labor. Further, she and her partner lived in the top story of a three-floor building and due to the strain on her joints of walking up and down stairs she was generally restricted to her apartment on a daily basis. Sophia and Marlene's physical impairments restricted their use of space regardless of the amount of income support they receive through ODSP; however, as will be discussed in detail below, even these two women commented that their use of public and social space was also restricted due to their financial circumstances and not solely as a result of their physical impairments.

Lives as an ODSP Recipient

Most of the women had received income assistance for at least 10 years, three of whom had continuously received support since legally becoming adults at the age of 18. One woman, who had received ODSP/VRS income assistance for 12 years, had just recently been able to discontinue support due to a positive significant change in her health status. Another woman received support for less than a year at the time of the interview after having successfully appealed the Disability Adjudication Unit's (the body that rules on applicants' appeals) decision to deny her ODSP support after several years of reapplying and appealing administrators' decisions.

Findings

The discussion that follows illustrates some of the complex ways in which the women's status as a recipient of ODSP income support impacted upon their everyday lives and lifeworlds -- the concept introduced earlier as being the everyday spaces and places that make up a person's daily routine (Dyck, 1995). Social space was mentioned regularly during the interviews as space that had been diminished in the women's lifeworlds. This includes such places as the mall, movie theatres and friends' houses as well as recreational spaces such as public parks, local neighborhoods, and recreation centers. The women's stories revealed the ways in which ODSP policies and regulations affect their abilities to engage in social spaces, especially through rules and regulations related to transportation and travel.

Accessing Information

Nine of the 10 women interviewed expressed concern about their abilities to access accurate and current information about the ODSP. Their inability to easily access such information was compounded by the fact that they perceived the ODSP staff and administrators to be unaware of all the program's policies, regulations and rules. The women struggled to find out about rules and regulations regarding transportation and travel; they wanted to know whether or not transportation to and from medical clinics was covered and if there were discounts or subsidies for public transportation. Given that money was extremely limited for many of them, they viewed knowledge about transportation reimbursements and discounts as a necessity, yet they rarely received this sort of information from administrators.

Angel, a 49-year-old single mother who had worked full-time before becoming chronically ill, reported having to look up information about transportation reimbursements herself, and she found out that:

"...if I ended up spending out more than $15 a month... going to doctors, eye specialists, drug stores, anything medical, you can get reimbursed for it. I was really amazed at that!"

She went on to say: "One of the biggest things that is totally lacking is the support in knowing what's available." Michelle, a 42-year-old woman who holds a Master's degree, reported having found out about such a reimbursement "too late":

"This past summer I fell and injured my ankle. I had to go to physiotherapy in my own home town...It was hard even taking the city bus so I had to take cabs — a very expensive proposition if you are going two or three times a week! I now find out that if I'd saved my receipts I probably could have applied and got the money back from ODSP for that transportation because of the medical appointments."

Though it is certainly not the case that all, or even most, transportation expenditures are covered by the ODSP, it is important that recipients be made aware of what types of transportation supports are available to them so that they do not find out too late, as in the case of Michelle. This lack of informational support has made some recipients reluctant to leave their homes to travel to public places or to see friends and family. Because even if using inexpensive public transportation, they are concerned that reimbursable expenses will not be reimbursed.

Accessing Space

Eight women experienced extremely limited daily lifeworlds as income support recipients, in part due to their restrictive economic situations. The minimal amounts of financial assistance provided by the program, less than $12,000 per year for most recipients, literally restricts the women's abilities to engage in activities of daily life that many people take for granted. Except for one woman who was pursuing her undergraduate degree at the time of the interview, most of the women rarely left their homes on a regular basis. The limited amount of money they received through the ODSP income assistance program operating in conjunction with physical and mental impairments restricted trips outside the home.

Sophia, a 33-year-old woman who was recently able to discontinue her ODSP support due to improvements in her medical condition, believed that her limited financial resources as a recipient certainly restricted her everyday activities, but she also felt that she was not "owed" any additional income assistance. She was the only woman interviewed who believed that though the funds provided to recipients were minimal, they were also adequate and that persons with disabilities were not entitled to any additional income assistance. Regardless of such differences in opinions, it is clear that limited finances have shrunk many of these women's lifeworlds and use of space outside the home due to the costs of transportation and tickets or entry fees for social and recreational spaces.

Six of the women indicated that the cost of transportation was a significant barrier to activities outside of their homes. Jean and Michelle, sisters with the same congenital illness who share a home, have been literally forced to remap their daily paths and activities around the public transit schedule and the available monies for social and recreational activities. Jean, a 47-year-old woman who has never been involved in paid labor, commented that at times she does not even have the money to pay for the limited public transportation in her city, and so she is forced to walk to places despite her poor vision.

Lyndsay, a 22-year-old woman with a visual impairment who generally does not find her use of space to be limited by being an ODSP recipient, demonstrated how certain aspects of the ODSP directly constrain a recipient's use of space outside of the province. As she explained:

"I went away on a French exchange for 33 days to Quebec and [the administrators said] 'you have to tell us [you're leaving the province] and you have to ask for permission.' And the only reason I got to go is because I said it was for educational purposes...if I had said that I just wanted to go to get a better command of the language, they would've been like 'no, sorry'...I said to somebody, the next thing you know they'll have us all wearing tracking bracelets! Like the ones the put on prisoners!"

Her comments indicate her feelings of being a prisoner because her use of space outside of the province was controlled. Lyndsay's experience shows that a shrunken lifeworld or daily path is not the only outcome of receiving ODSP income support. Angel expressed a similar sentiment when she said: "...hey, let's put it this way, outside of being in jail, [receiving ODSP] is just about the same."

Socio-spatial isolation

Five of the participants expressed that they felt socially and spatially isolated as a result of receiving ODSP income support. Angel, a woman who had been receiving income assistance for more than 10 years at the time of the interview, stated that she could no longer "afford a social life" as her limited financial resources affected her ability to engage in everyday social activities such as going to the mall, and purchasing goods once there, or even visiting friends. Given that Angel's chronic illness was developed after being involved in paid labor, her current daily lifeworld is a small fraction of what it once was as the workplace and social interactions with colleagues are no longer part of her everyday life. Her lifeworld has since been limited to her apartment and the few visits she makes with neighbors in the same building. Her use of public space depends on friends and family members who transport her. She believes that restricted finances are as responsible for these changes as are her changing levels of ability, thus Angel is facing a diminished lifeworld as two major forces take hold: the process of learning to live as a woman with a disability and the process of living as an income assistance recipient.

As Linda, a 38-year-old woman who had been employed prior to receiving ODSP, put it: "I think I'm going out a lot less [since before receiving ODSP]. I have a lot less social contact because I can't afford it and that's resulting in more isolation. There is more isolation for me." Marlene, aged 46, who was employed full-time before becoming chronically ill, says that she and her husband "go nowhere, and do nothing." Both Linda and Marlene are now physically isolated from many of their work and personal friends and are frequently restricted to the private space of their homes, despite having once led fuller socio-spatial lives with money to engage in social and recreational activities. Like Angel, they are negotiating simultaneous experiences of a shrinking lifeworld due to physical conditions and economic limitations as ODSP recipients, resulting in socio-spatial isolation.

Discussion & Implications for Social Policy

The lack of access to timely and accurate information about transportation and travel and the limited amounts of financial assistance available through the ODSP have prevented the women's full participation in social and spatial life. What their experiences have shown is that while socio-spatial impacts, such as shrinking lifeworlds (Dyck, 1995), constrained daily paths (Wilton, 1996), altered social careers (Robinson, 1990), socio-spatial imprisonment (Imrie, 1996), and isolation (Marris, 1996) are all significant factors in the women's everyday lives, the major overall finding here is that their roles as income support recipients are as much responsible for these realities as is their status as women with disabilities. This reality demonstrates how larger state structures and the political system, through social policies and programs, affect the everyday lives of women with disabilities. Other than travel restriction outside the province, the ODSP Act does not directly regulate the women's access to social and recreational spaces; nonetheless, the Act furthers the socio-spatial marginalization of this group of citizens, a group already at the "margins of the margins" (Chouinard, 1999).

The women identified a need for improved access to program information. The fact that some of the women had received ODSP for years and were still unaware of most, if not all, of the rules, regulations, supports, and services of the program is alarming, particularly as this is a social program funded with taxpayer monies. It is important that information be distributed in a timely manner. Some of the women have suggested that updated informational flyers should be distributed along with monthly ODSP checks and notices as a way of disseminating such information. Regardless of how administrators and policymakers choose to increase levels of access to vital information, what is important is that a change to disseminate timely information be made as soon as possible.

However, the implications for policymakers extend farther than simply disseminating information to recipients. The women's experiences show how transportation, as part of the ODSP program, creates significant barriers in their everyday lives. The solution does not solely rest in increasing the amount of income support. Transportation reimbursements, vouchers, or subsidies for other necessity trips besides medical appointments, such as grocery shopping, may be one possible solution. This would free funds for social activities in the public sphere and help reduce the almost forced isolation reported by some of the women. Policymakers need to consider the fact that many persons, despite the presence of illness or impairment and receiving ODSP income assistance, want to be active citizens within Canadian society and space.

In addition to considering gender in policy creation (Mudrick, 1998), we should also consider disability or impairment status, the importance of socio-spatial lives as ODSP recipients, and the recipients' abilities to participate in social activities while living with illness or impairment and a tight budget. The women's experiences demonstrate the need for policymakers to consider their desires and expectations as citizens, such as the desire and expectation to utilize public space. Hopefully in the future when working toward evaluating the program and/or considering possible changes, policymakers will be create a "space" for consulting with both men and women who receive income assistance. In doing so, recipients can participate as active members in Canadian society and space on multiple levels. The women's frustrations regarding this were evident throughout the interviews, sparking one woman to say that people in her position are the "forgotten poor," out of sight and out of mind. Their experiences of living on ODSP income assistance illustrate how political and economic structures create economic and social situations that are more disabling than any physical or mental impairment.

Acknowledgements

Funding for this research was made possible through a Social Sciences and Humanities Research Council (SSHRC) Standard Research Grant (on which Dr. Vera Chouinard is the principal investigator). I would like to acknowledge the support and guidance of Vera Chouinard and would also like to thank Charlotte Yates for encouraging me to pursue this line of investigation as a follow-up to my M.A. research study. Finally, I would like to thank all the women who participated in this study for their willingness to share their personal stories and experiences with me.

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