What Is a Happy Life?

Sara Hendren and Sunaura Taylor inspire us to see the illusion of self-reliance.

Posted Oct 17, 2020

Brian Rdzak-Martin / Wikimedia Commons
Source: Brian Rdzak-Martin / Wikimedia Commons

It’s a question many disability scholars pose because of the long-standing assumption that a person can be happy only if they embody the ideals of the autonomous and economically productive “Western” individual whose mind and body are fitted to the cultural and built environments into which they were born. As early as 1835, Alexis de Tocqueville emphasized these ideals as essential to the American. Every person, he wrote, seeks to be his own master, accountable and dependent to no one else (except perhaps God); he “exists only in himself and for himself alone.”[2] The opposite condition, in which a person needs and depends on others, has led to stigma, discrimination, and marginalization.

More than a decade ago, after her son Graham was born with Down syndrome, Hendren became familiar with devices like ankle braces, pressure vests, and crutches. She marveled at how, in that context, the language of medicine and disability had become a material language, concretized in objects. For example, the person who uses a wheelchair becomes not only “wheelchair-bound” but is also represented in signs posted at parking spots or on bathroom doors with a symbol of a wheelchair, as if the person and the chair were one. The effect of this imagery on one’s sense of self can be profound and enduring. A disability comes to define the whole person, and people with disabilities may also come to think their disabilities deprive them of agency and individualism.

In an interview, Hendren told me, “It occurred to me that there might be a way to think about, to design, prosthetics in a way that might speak a different language about their users.” She’s helped design a new wheelchair symbol that replaces the rigid, mechanical image (also called the International Symbol of Access, or ISA) with one that is active and tilted forward, suggesting that the person and not the chair is in control. She designs wheelchair ramps that are artistic, beautiful, and can be used by both wheelchair users and skateboarders. To show the beauty of combining the art of movement with assistive technologies, she has collaborated with choreographer Alice Sheppard to design access ramps for dancers who are differently able and use wheelchairs.

In the case of eyeglasses, we’ve already achieved the goal of making prosthetics a more seamless part of everyday life. We often compliment people on their glasses even though we are publicly acknowledging a vision impairment. But we don’t compliment people on their hearing aids or their wheelchairs, even though those are also assistive technologies. Hendren, it seems to me, is saying that we need to “normalize” a greater number of such technologies, rather than view them negatively as dependence. After all, we are all dependent in some way, whether on our friends and family, or the eyeglasses that help us see.

Hendren’s experience raising her son has also made her sensitive to the connection between the idealized individual and the rise of selective abortions to specifically eliminate Down syndrome because, she said, “it’s as if your child’s life is an affront to the logic of utility and efficiency and how people are valued for their economic worth.” Hendren told me she is “haunted by the fact that those very possibilities are on a collision course with the optimization of pregnancy and the developing fetus.” Her concern is that if children like her son are not even born, what does that say about how we define a good life and who deserves to have one?

Graham, she told me, “is living his best life all the time.” She doesn’t want to idealize him, or fashion a cliché story about victory in the face of serious disability, but she wanted me to know that he is “a thriving, happy person” even if he is not the person who follows the developmental milestones our society has decided are “normal.” She told me, “If [Graham] were to get a job bagging groceries and love his job every day and feel a part of a thriving, happy community, then I will say ‘success,’ 100 percent.”

Indeed, increasingly the valued 21st-century worker is no longer the self-reliant individual. Instead, they might be self-employed, work part-time while going to school in hybrid college programs for people with disabilities, receive ongoing job support in relation to a disability, combine paid work with family care or volunteerism, interact virtually rather than in person, and continue to live with their parents after the arbitrary ages of adulthood, such as 18 or 21 years of age, or in creative family or group configurations. Such creativity, Hendren writes, “is endless and necessary.”

This re-evaluation of the “typical” life is one of the aims of disability studies: to interrogate rather than simply accept the forces that constrain our creativity, and our resistance to ableism. Her son Graham, Hendren says, “needs a world with a robust countervailing understanding of personhood and contribution and community in it, human values that are alive and operational outside the logic of the market and its insistent clock.”[3]

Hendren’s perspective parallels that of disability rights activist and scholar Sunaura Taylor.

Taylor is differently mobile. Because she was born with a condition called arthrogryposis multiplex congenita (a rare disease in which joints become fixed), she has limited movement and uses a wheelchair. An accomplished artist and author, and one of the most inspiring leaders in disability studies today, Taylor uses her mouth for many things, including operating her smartphone and painting. She says that growing up in Arizona, she suffered from the shame of being taken to healers because her “body was bad,” but she did not imagine that she intrinsically lacked value to society, as a family member or as a citizen. She did believe, however, that she could create more value if she was more physically independent.

And when she was finally able to do most things by herself, such as dressing and going to the bathroom, there was no great transformation in her life. What caused her the most discomfort was not her physical dependence but “the stigma others attached to needing help, and by the worry that these physical necessities could lead me into a life without choices.”[4]

Taylor has also recounted a remarkable story about a day in 2003 when, after participating in a protest for disability rights, she went to a busy restaurant. There were no tables free, but she was able to get some food at a counter. Someone noticed she was having difficulty eating and said, “You can ask for help here. This isn’t a place where we value independence.”[5] 

Taylor’s experience that day suggested that something is changing in America, that perhaps disabilities less often produce isolation, that disabilities connect people in relationships of care and reciprocity, that to be dependent is to be human.

References

[1] Hendren, Sara. 2020. What Can a Body Do?: How We Meet the Built World. NY: Riverhead.

[2] De Tocqueville, Alexis. 1899 [1835]. Democracy in America, Volume 2. New York: Colonial Press, p. 332.

[3] Hendren, What Can a Body Do, p. 181.

[4] Taylor, Sunaura. 2004. “The Right Not to Work: Power and Disability.” Monthly Review, March 2004, pp. 30–44.

[5] Rothman, Joshua. 2017. “Are Disability Rights and Animal Rights Connected?” The New Yorker, June 5, 2017.