Monday, September 7, 2020

An Interview with Lily Wong

by Emma Wallens & Sarah Wolf


Section I: Demographics


Lily Wong is a Chinese-American woman has lived in the Greater Boston Area of Massachusetts all thirty-four-and-a-half years of her life -- largely wheelchair-bound for the last two.  As a toddler, she was diagnosed with cerebral palsy, but she told us, “I benefited greatly from physical therapy to stay ambulatory all throughout my youth.”  In more recent months and years, though, she has been less steady on her feet, so she opts for the wheelchair in most public spaces.  


Lily, an only child, told us she had a “happy childhood” and  considers herself a “product of the Boston Public Schools” for all of her pre-college education.  After graduating high school, she attended Harvard University where she completed a BA in Biochemical Sciences.  At that time, she shifted gears to do a teaching program and then taught in a high school for ten years -- mostly science subjects like biology and chemistry but also geometry and ESL classes.  


Along with her best friend Chuck, she now owns a bike shop in Cambridge.  She had part time roles at an earlier iteration of the shop which was a bike-share program on Harvard’s campus founded by Chuck and another friend of his. “Once we switched to being a bicycle retailer, we moved to an off-campus brick and mortar, and I left my career in education to fully develop operations and support the shop in earnest,” Lily said.  Owning the bike shop became just as much a social justice cause for both Lily and Chuck as it was for their mutual love of biking.  Chuck is an African-American man, so both of them are people of color.  Providing physically accessible bikes to those with different abilities is understandably a passion for them both as well.  


Lily currently lives with her mom and her dog, Frankie, a beagle-mix who also comes with her to work every day.  She considers herself to be a morning person and enjoys swimming as often as possible. “I have grand daydreams filled with ideas for cooking and baking, but don’t always get to realize them,” she told us.  She considers herself to be a logical thinker as well as a good judge of character.  She dreams of redistributing the use of state/local funding to improve public education, health and wellness services, and overall community development. “Strengthening these areas would form a strong base on which communities can flourish and help people become better citizens not only of their communities but also the world as a whole, wherever someone may travel,” she said.  It likely comes as no great surprise that Lily’s life motto is “Just keep swimming” -- certainly, that is what she is doing.


How We Chose Lily As Our Interview Subject


For seven years, Sarah managed a family-owned yoga studio, vegan cafe, and wellness center that one day got a new neighbor: Lily and Chuck’ bike shop.  Both Lily and Chuck were frequent visitors in the cafe because there was no wheelchair-accessible bathroom for Lily to use in their store space.  She was obviously welcome to use the cafe’s bathroom and seeing her smiling face a few times daily became a treat for Sarah and the rest of the staff.  Even though Sarah and Lily did not know each other that well beyond work “chit chat” and other pleasantries, a kinship was formed, so Lily jumped to mind when it came time to find an interview subject for this paper.  Luckily, Lily agreed to speak with us.


Section II: Model of Social Oppression and Its Applications 


Having established a bit about how Lily feels about herself and her identity from a personal standpoint, it is appropriate that we lend a sociological perspective to this interview. Lily is a member of three oppressed groups — she is a woman, is Asian-American, and is differently abled because of her diagnosis with cerebral palsy. Because Lily stated in the interview that she is “a person first and one with a disability second, and everything else kind of falls away,” we will approach this analysis with a focus on her identity as being differently abled, and will focus on the intersectionality between her other identities in Section V.


This model, theorized by Hardiman, Jackson, and Griffin (2016), proposes that “oppression is an interlocking, multileveled system that is maintained and operationalized on three dimensions…” (p.27). These three dimensions are the 1) contextual dimension, 2) the conscious/unconscious dimension, and 3) the applied dimension (Hardiman et. al, 2016). The focus of this analysis will be the contextual dimension, which can be further partitioned into three levels: 1) individual, 2) institutional, and 3) social/cultural (Hardiman et al., 2016). These three levels can be thought of as experiencing oppression in the micro, mezzo, and macro spheres.


Individual oppression is defined as being maintained by “attitudes or behaviors of individual persons. These behaviors can be conscious or unconscious, but their effects are equally destructive” (Hardiman et al., 2016, p. 27). An example of this type of oppression would be an able-bodied person speaking slowly to a person they perceive to be differently abled. Lily has experienced oppression at this level and told us, “Once in awhile people are surprised that a person in a wheelchair works at the bicycle shop. Many people willingly help me out, and I have luckily not yet experienced anyone pushing me somewhere without asking. Sometimes when I am out and about, people try to help and end up just being in the way when it’s something I can do easily enough on my own.”  Lily’s expression of individual oppression is very similar to the case given in the article by Hardiman. Customers generally assume that because she uses a wheelchair, she is not capable of performing duties that are congruent with her daily job. Her earlier stated view of herself “as a person first” displays an unconscious, personal (albeit, individual) desire to push her other identities to the background.


The institutional level of oppression mirrors Lily’s hesitance to consider her wheelchair use; most public spaces and even housing establishments are not designed for those who are differently abled. If there are modifications for wheelchair use, they usually are costly. The institutional level involves entities that are bound by physical and legal involvement in lack of accessibility or intentional exclusion. Per Hardiman et al. (2016), “Social institutions codify oppression in laws, policies, practices, and norms… [they] are both intentional and unintentional… Examples include… holding an organizational social event in an inaccessible space without thinking about how this decision might preclude the participation of members with mobility impairments” (p. 27-28).


Lily offers a unique perspective of the institutional level because she had been ambulatory until the past two years. She told us there were many frustrations with being in a wheelchair, including squeezing into smaller spaces, reaching things higher up, and getting physically tired from wheeling around. She stated, “The most annoying part is often the public restrooms where there are lips to get in the front door and some stalls are quite narrow even though they are supposed to be for handicapped/wheelchair users.” Additionally, she cited that brick and cobblestone sidewalks were problematic and some stores had narrow aisles. She told us that sometimes when she gets frustrated, she “will just leave.” The majority of the obstacles in Lily’s life are omnipresent -- one needs shelter, food, and access to bathrooms. Advocacy is needed to influence structural and legal designs work that take into consideration accessibility for all. 


Societal oppression is more insidious. Cultural norms define some people’s worldview and include “philosophies of life, definitions of good and evil, beauty, normal health, deviance, sickness, and perspectives on time” (Hardiman et al., 2016, p.28). These norms can be used to further oppression because the agent group uses the “perceived normality” to excuse the treatment of those who fit the label of “other.” Lily expressed how she perceives intersectional identities when she told us, “I am a Chinese-American and have not experienced any negative impact, although I think the reasons for this are that I grew up in Boston and also have a visible disability from which I perceive significantly more impact.” 


Even when prompted, Lily did not speak of her personal feelings of oppression much throughout the interview, but when she did, it predominantly centered around her wheelchair use or cerebral palsy diagnosis. A study by Coleman, Brunell, and Haugen (2015) about the influence of gender and disability stereotypes is an enlightening look at how identities intersect to form a societal perspective on a differently abled woman such as Lily.


Coleman’s study presented participants with descriptions of a male or female character that was either physically or intellectually differently abled. Participants then had to rate their character on the following: 1) warmth, 2) competence, and 3) how much social distance they wanted from that character (Coleman et al., 2015). The results were startling in that participants desired less social distance from women who are physically differently abled and viewed them as more competent than those who were intellectually differently abled, but those who were physically differently able were still viewed as less competent than their able peers. 


An additional variable added to the study to gauge perception of someone who is differently abled was physical attractiveness. Participants were asked to reassess three selected variables when they were given an additional rating of how attractive each character was. The attractiveness of the person changed how participants evaluated Variable 3: Social Distance.  This was only true, however, for women who were intellectually differently abled. The authors then posited that those who are physically differently abled “may be viewed as asexual or unable to attract partners. In other words, while they may desire sexual activity or attention, they may not be able to find a partner because they are judged by others to be ‘damaged goods’” (Coleman et al., 2014, p.179). Lily did not discuss more personal aspects of her life such as a romantic or sexual partner, but she did briefly touch upon pressure to appear attractive to others. When asked how gender impacts her sense of self or identity, she responded, “I find myself constantly thinking about how to feel/look less frumpy in the wheelchair.” Lily feared that her wheelchair detracted from her sense of beauty because it does not fulfill societal norms.


It is clear that there is still work to be done to address the infrastructure to accommodate those who are differently abled. There is also much to be done to counteract the subliminal societal messages of what is deemed “normal” and how to address these norms without being condescending to those who are differently abled. The Coleman study offered a glimmer of hope, however: “Past research examining children’s attitudes toward peers with physical and intellectual disabilities used a modified social distance measure and found no significant differences in children’s desired social distance from peers with a physical or intellectual disability” (Coleman et al., 2014, p.179). Perhaps we need to retain the non-judgemental attitude from our youth as part of the solution. 


Section IV: Commonalities between ourselves and Lily


Sarah and Emma are women near the age of Lily (+/- ten years). We have both experienced oppression based upon our status as women, either through economic loss or personal instances. Also similar to Lily, we both decided to change our careers after formal education; Emma has a background in biology and Spanish but decided to go into social work and public health, whereas Sarah switched from a career in small business management to pursue social work. Emma also volunteered in a hospital during her undergraduate career, same as Lily.


Perhaps the biggest takeaway from this section is that regardless of how someone who is differently abled is perceived by society, they will have typically accomplished similar goals to someone who is abled. If we were to place a profile of the three of us on a bulletin board, sans description of abilities, the average reader would not consciously or unconsciously make certain assumptions about each of our capabilities. 


Section V: Implications for social work practice with Lily’s demographic


One key takeaway from our conversation with Lily is the near “invisibility” of her ethnicity, gender, and even her use of a wheelchair in regards to her perspective on her own life.  She is a happy, bubbly, chatty woman who would not have even mentioned being in a wheelchair if we had not asked.  What is notable about that is how adapted Lily is to all aspects of her personhood.  In that respect, it is helpful to consider reframing something like being in a wheelchair as a disability and, instead, think about something like a wheelchair in the same vein as any other tool.  Hendren (2017) suggests that  “All technology is assistive technology” (p. 140) in that anything ranging from crutches to a cell phone to a hearing aid to a blender is “enabling or augmenting a sensory experience.”  Labeling some devices as for a disability and others as for general usage or even as a luxury is counterproductive and perhaps even over-explanatory.  Hendren (2017) reminds us that “any us/them distinction between able-bodied and disabled is a false divide.  After all, how cultures define, think about, and treat those who currently have marked disabilities is how all their future citizens may be perceived if and when those who are able-bodied become less abled” (p. 139).


Instead of quantifying only some technologies as assistive, then, Hendren (2017) suggests we “are all getting help from the things we make” (p. 141).  That re-frame of adaptive or assistive technologies aims to remove social and cultural stigmas from wheelchair use.  As social workers, it is extremely important to remember that what most folks want is to be perceived as “normal” and allowing them to view their adaptive tools like wheelchairs in the same frame of mind as they might consider their cell phones could empower them as well as give them some new vocabulary to explain the assistive nature of the technologies they rely upon to get around.


It is also imperative that we as social workers do not fall into the trap of paternalistic prejudice. Coleman, et.al. (2014) reports, “The content of disability stereotypes is associated with a perceived lack of competence and a high level of warmth” (p. 178). A social worker that has a client who is differently abled should not make assumptions about their capability to perform daily tasks, and should not speak to them in a condescending manner. 


Lastly, there is a unique aspect to Lily’s diagnosis of cerebral palsy that may affect clients with the same diagnosis. In a study performed by Xiaoke Zhao, Mengying Chen, Senjie Du, Hongying Li, and Xiaonan Li, salivary cortisol levels of participants were assessed throughout the treatment processes (cortisol is the infamous “stress hormone”) to determine the levels of stress and pain in the children throughout the duration of treatment. It was concluded that  the majority of the children experienced pain during the entire course of the early developmental intervention programs” (Zhao et al., 2015, p.172). The implications that this has for social workers is that it is important to include details of treatments (regardless of the diagnosis of the patient) in an initial assessment when working with both children and adults to see how treatments may have affected their present or previous mental state. 


Section VI: Summary of oppressions of Lily’s demographic and their societal implications


Human rights

Lily is in a unique position of intersectionality where three roads converge:  she is a woman; she is Asian-American; and she has a visible physical disability. As previously discussed, Lily does not actively focus on any of these three aspects as being particularly limiting.  This harkens back to when Hendren (2017) quoted from renowned disabilities specialist Lennard Davis’ Bending Over Backwards: “Before the 19th century in Western culture, the concept of the ‘ideal’ was the resonant paradigm in relation to all bodies so all bodies were less than ideal. The introduction of the concept of normality, however, created an imperative to be normal” (p. 140).  The focus, then, went to the notion of aligning all bodies and capabilities in a bell curve model (Hendren, 2017).  Without that shift in “normalizing,” there would be less focus on those whose bodies functioned differently than others but since the shift did occur, “exceptional normal-ness was prized above all else” (Hendren, 2017, 140).  As a result, people who use a wheelchair, as Lily does, are easily marked as abnormal or differently abled than others.  


Social justice

Asian-Americans are often thought of as a “model minority,” in that they are a classification of people of color who are perceived to behave in alignment with the majority.  According to Chang (2018), that translates into Asian-Americans being “racialized positively” (p. 242).  An odd twist to that, though, comes into play with people from this demographic who are disabled. Chang (2018) states that being part of the model minority “makes Asian-American bodies hard to see,” adding, “racial admiration for Asian-Americans makes their disabilities illegible” (p. 242).  The social justice implication is that folks like Lily may be overlooked because they are expected to fall in line quietly and not have much say in any broader factors that may play into public understanding of their disability.


Economic justice

As a business owner, Lily makes conscientious decisions about hiring practices, with the goal to have a diverse staff comprised of under-represented groups in the biking world. There is an emphasis at her store to provide a wide variety of adaptive devices for bikers so anyone who wishes to pursue their love of this mode of transportation and recreation are able to do so.  As Hendren (2017) reminds us, “Some users want discreet tools. But others roundly reject the notion that all bodies should conform to some standardized or performative ideal.  That kind of variability and disagreement should… be a productive friction for designers” (p. 143).  Walking into Lily and Chuck’s shop is an inclusive experience for bike lovers across all ethnicities and physical abilities.


What we learned from this assignment


What helped/hindered our learning

Lily does not outright identify as being oppressed even though our learning about intersectionality clearly identifies her as someone who is part of non-dominant culture in multiple ways.  Understandably, that made it challenging to frame questions that did not seem as if they were outright offensive to her, based on what we were discovering about her as we went along.  


Useful tools from this experience to manage the influences of personal biases and values in working with diverse clientele

Lily’s focus on every aspect of her life other than her gender, ethnicity, or physical limitation was a good reminder not to assume that being from a group (or groups) thought of as being oppressed stands as the first (or second or third) defining characteristic of a person.  Human beings are complex and no two are exactly alike, so there is no one approach to dealing with a) women; b) Asian-Americans; or c) wheelchair-bound people.  The phrase “meet your clients where they’re at” comes to mind -- release all biases and get to know the person in front of you without assuming you know their story simply because they check certain boxes.


What do we need to do more of to support our learning?

Continuing to dialogue with people with as many different kinds of backgrounds as possible builds awareness and allows space both to see similarities as well as differences across a wide variety of spectrums.


Thoughts on how will we apply insights/lessons from this assignment to advocate for human rights, social and economic justice

Recall how Sarah met Lily because the storefront she, as the business owner, rented did not have a bathroom that was accessible for her with her wheelchair.  Lily was lucky to have a neighbor whose business had similar hours of operation which allowed her access to a bathroom, a pretty basic human right in the United States.  Therefore, keeping in mind the possible struggles or impossibilities that might face someone who relies on the assistive technology of a wheelchair is imperative in setting up not only a welcoming but a functional space.  Everyone who needs to should be able to get easily through doors or onto upper levels or access supplies or use the bathroom.  Hearing Lily’s struggles with these things we able bodied people might take for granted certainly broadened our perspective and gave us much to consider as we move forward in our social work practice.




Annotated References


Chang, Yoonme. 2018. Asian Americans, Disability, and the Model Minority Myth. 

Flashpoints for Asian-American Studies (pps 241-253). Cathy J. Schlund-Vials (Ed.). New York: Fordham University.

This book chapter was written by an English professor with a specialization in Asian-American diasporic literature and culture as well as a researcher in disability studies who herself was a physically disabled Asian-American woman.  She begins with a discussion of Harper Lee’s novel To Kill a Mockingbird and poses the question: what if an Asian-American had been accused of murder and not an African-American -- would an Asian-American have received the same degree of unfair treatment as the black man who was accused of a murder his physical disability alone should have proved he was not capable of committing?  The author argues that, while an Asian-American may not have gotten as preferential treatment as a white person might have, because Asian-Americans are a so-called “model minority,” the odds of greater leniency would have increased.  She goes on to define that a model minority is the “ideal” non-dominant culture in that they align most readily with dominant culture.  The author states that, therefore, Asian-Americans are “positively racialized,” meaning dominant (white) culture finds them more favorable than other minority groups.  She then argues that members of model minority culture become somewhat invisible, especially in terms of disabilities, to dominant culture.  In fact, she states that sometimes being part of the model minority causes others to view Asian-Americans as being superior in some aspects, which mutes the response to physical and mental disabilities even more.  She calls this “compliant subjectivity,” meaning that dominant culture need only move forward with their standard assumptions about Asian-Americans without feeling the need to move beyond those generalizations.  The author uses the example of the nisei soldier, Japanese-American men who fought for the US Armed Forces in World War II, despite Japan being the inciting opponent who drew the United States into that conflict.  The author points to the heroism and contribution of these soldiers and the delayed accolades from the country they served.  She likewise draws comparisons from other literature and artists whose work has been obscured by dominant culture.  The author deeply emphasizes viewing the entirety of any and all humans and not merely categorizing them in any way -- that all bodies and minds are unique and full of value -- and honoring a person for that uniqueness and value should supercede any and all assumptions aligned with place on the social and cultural continuum. As social workers, bearing in mind this author’s personal experience as well as her deeply researched position on the impacts of being a model minority as well as someone with a physical disability will remind us to see clients as true individuals, not beholden to stereotypes or preconceived notions.  As a broader culture, it is increasingly important to hear the voices of those whose stories have been muted by oppression and support them as we all move past the generalizations and into the space where old ideas can be reimagined by the people living the lives in question instead of dictated to them by a dominant sector of society.

Coleman, J. M., Brunell, A. B., & Haugen, I. M. (2015). Multiple forms of prejudice: How gender 

and disability stereotypes influence judgments of disabled women and men. Current Psychology, 34(1), 177-189.

This study was an experiment on how gender affected participants’ conscious and unconscious biases against differently abled men and women. Participants read a brief descriptions of a female or male character that was either intellectually or physically differently abled (each gender could be of either type). Participants were then asked to evaluate their feelings towards their character on the following: 1) warmth, 2) competence, and 3) how much social distance they wanted from the character. Social distance can be defined as “the level of intimacy one is willing to have with another person and reflects people’s willingness to recognize, live near, and associate with an individual or group of individuals.” The introduction of this article details the social stigmatization that those who are differently abled undergo in their daily lives, and how they are portrayed in the media. The common theme of this stigmatization was the paternalistic prejudice; people stereotype those who are differently abled as warm individuals, yet not competent ones or someone who deserves their respect. This is seen in the oversimplification of calling a differently abled person a “superhero” or “warrior” for performing simple tasks or going through daily life. This type of pity allows for subliminal oppression and an internalization of negative stereotypes. A unique facet of this paternalistic prejudice is that it is present in the way that some people who do not identify as female treat those who do-- there is an intersection between being differently abled and a woman, and it is unfortunately compounded in those who are both. Results from this social experiment demonstrated that there wasn’t a difference in the way men who were intellectually or physically differently abled, but that women who were physically differently abled were viewed as more competent and participants wanted less social distance from them than women who were intellectually differently abled. This was an interesting result; perhaps it is a result of the intersection of the identity of a woman and physically abled and paternalistic prejudice. To assess one more variable, researchers then added attractiveness level to each character. For men, discrepancies were statistically insignificant for both groups. For women, it did not affect those who were physically differently abled, but those who were intellectually differently abled. This is important to social work because it demonstrates the need to understand a person’s multiple identities and how they may factor into one’s experienced oppression; even level of attractiveness can play a role in societal oppression, something mentioned in our Direct Practice Methods textbook to look for during the initial assessment.

Hardiman, R., Jackson, B. W., & Griffin, P.  (2013). Conceptual foundations.  In M. Adams, 

W. J. Blumenfeld, R. Castañeda, H. W. Hackman, M. L. Peters, & X. Zuñiga (Eds.), Readings for diversity and social justice (3rd Ed) (pp. 26-35).  New York: Routledge.

Hendren, Sara. 2017. All Technology is Assistive: 6 Design Rules on Disability. Making 

Things and Drawing Boundaries (pps. 139-145). Jentery Sayers (Ed.). Minneapolis, Minnesota: University of Minnesota Press.

This book chapter was written by a design researcher and Olin College of Engineering professor who focuses heavily on social design that engages the human body and the politics of disability.  She argues that the disability is a universal concern for a few reasons: first, there is a false divide between able-bodied and disabled since any human at any time can suddenly shift from being able-bodied to disabled, therefore all human bodies should be valued universally.  Second, in the United States there is a heavy-handed focus on with the statistics of what constitutes “normal,” which is felt pervasively across many aspects of social culture, even going beyond able/disabled into other uncontrollable aspects like race or body size.  She cites the work of Lennard Davis,  a renowned specialist in disability studies, who concludes that the focus on “what is normal” in regards to bodies became a topic of discussion in the 19th century as eugenics popularized.  Eugenics studies utilized a “bell curve” model that has seeped into the lexicon even of modern day discussions when parents refer to their children as being “ahead of the curve,” for example.  The concept of being “normal” or falling in line with the perimeters of this bell curve model became popularized and heightened the desire to be perceived as normal.  What the author argues, though, is that none of us are “normal,” but, instead, every human has limitations that require assistive technology.  She argues further that language around assistive technology should shift so as not to create a social divide between folks who rely on a wheelchair and folks who rely on their smartphone because what both forms of technology do is assist or enhance an experience.  By reframing the language used to label or discuss these varying technologies and calling them all “assistive” instead of normalizing the use of a smartphone and regarding a wheelchair with stigma, social culture could be better served to view these technologies across a more even playing field.  She focuses on how these assistive technologies are designed, either to be more or less visible, arguing that invisibility is overrated (in other words, that hiding the need for an assistive technology like a hearing aid may be good for some but not necessarily for all).  She also challenges readers to re-think what a “normal” body is and release some of the bell curve-type assumptions and definitions.  In that same vein, she suggests separating medical diagnoses from the technologies that are sometimes used in conjunction as well as designing technologies to be usable for a wide variety of bodies and not limiting use of items for singular functions.  Finally, the author concludes that those who are designing these assistive technologies should use their creations as a means to continue the conversation, not merely solve a problem.  As social workers, we can take away so much about the way language is used to add or remove stigma and being conscious of that can help empower not only our clients but our own outlook on life.  A big component of social justice has to do with reclaiming and reframing words, images, and beliefs -- applying that to assistive tools is a new spin on that idea and one that can normalize those tools for clients and members of our communities.

Zhao, X., Chen, M., Du, S., Li, H., & Li, X. (2015). Evaluation of stress and pain in young children 

with cerebral palsy during early developmental intervention programs: a descriptive study. American journal of physical medicine & rehabilitation, 94(3), 169-179.

This goal of this study was to assess pain and stress levels as well as pain sensitivity during early developmental intervention programs in young patients who are diagnosed with cerebral palsy. Pain measurements took place during different early intervention programs that addressed both traditional and nontraditional early developmental intervention programs. The following programs were used: Head acupuncture, neurodevelopmental treatment, neuromuscular electrical stimulation, Chinese traditional manipulation, and occupational therapy. The results of this study demonstrated that each program yielded pain and stress in young children with cerebral palsy. This study is important from a social worker’s perspective, especially one that may have a concentration in families and children or medicine because it demonstrates that clients with cerebral palsy most likely had significant levels of stress in their childhood if they were exposed to early developmental intervention techniques. These techniques are important and can spare the child from future physical pains or limitations, but can still be a source of distress. It is quite helpful to know this, especially when taking a client’s history. This study was also relatively culturally comprehensive, in that it included techniques such as acupuncture and manipulation that are not typically seen in Western medicine. Though the list of treatments is not exhaustive (other cultures have other ways of performing healing rituals that may be used), it serves as a reminder that one should be open minded when interviewing a client and to use inclusive language (saying “developmental intervention” in a client interview is more encompassing than saying “physical therapy”) within questions or ask for clarification on what the client has considered as treatment. Each disorder and disease comes with its own set of profound complications that are important to address should the client wish to do so. 




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Written in pursuit of my MSSA


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