No national data on HIV/AIDS among disabled, reveals RTI

I earlier shared my article published in RHiME highlighting people with disabilities living with HIV/AIDS as the missing voices in National AIDS response. I backed it up with RTI's and than complained to the Court of Commissioner, Disabilities GNCTD. The Delhi State AIDS Control Society (DSACS) took my suggestions in positive light and now has written to NACO. The later, however, doesn't have any national data on people with disabilities living with HIV/AIDS.

No national data on HIV/AIDS among differently-abled, reveals RTI

THE HINDU, NEW DELHI, May 10, 2015

The Capital has nine antiretroviral treatment centres, but none of them has information on the alternate format for blind or sign language interpreters for deaf people, who are living with HIV.

This is as per a Right to Information reply obtained by disability rights activist Satendra Singh from University College of Medical Sciences and GTB Hospital, Delhi.

Stating that persons with disabilities are the missing voices in India’s national AIDS response, the physician noted that in the first report of its kind, UNAIDS Gap report 2014 had identified 12 populations at higher risk of HIV (of which people with physical disability is one) and emphasised covering these to close the gap.

This Gap report estimates that India has the third largest number of people living with HIV in the world and accounts for about 4 out of 10 people living with HIV in the region.

“The National AIDS Control Organisation (NACO) in its response to an RTI had noted that they do not have any national data on HIV/AIDS prevalence among people with disabilities,’’ said Dr. Singh.

He added that the NACO annual report of 2013-14 too does not feature a single word with ‘disability’ or ‘persons with disabilities’. Disability is also not mentioned in the HIV/AIDS (Prevention & Control) Bill 2014 as introduced in the Rajya Sabha.

“The Delhi State AIDS Control Society (DSACS) has accepted the lacunae and responded stating that suggestions have been conveyed to NACO to include people with disabilities living with HIV in national response, convert all info on sexual and reproductive services AIDS/HIV in accessible format, prevalence among disabled to be included in next survey, disability questions to be used in existing survey,” said Dr. Singh.

“We have also suggested that State Commissioner of Disabilities be part of State AIDS Control & Prevention Societies. Also, the Medical Council of India has written to include disability studies to be part of the MBBS curriculum and Delhi Medical Council to issue instructions to Hospitals and Clinics to be disabled friendly,” he added.

People living with disability (PWD) are world’s largest minority and hence part of every social group included as vulnerable and risk group in UNAIDS Gap report.

“There is also low awareness of HIV among PWDs. The 2007 survey done in rural areas of India revealed the fact that one-fifth of people interviewed had never heard of HIV and is a cause for great concern. People with mental or developmental disabilities generally lack the ability to develop the social skills to recognise predatory behaviour and avoid vulnerable situation. The situation is same for wheelchair users isolated in homes and restricted from communicating with society,” noted Dr. Singh.

Singh S. India’s AIDS response: the missing voices of persons with disabilities. RHiME [Internet]. 2015 Jan 12 [cited 2015 Feb 14];1:[about 8p.].

People with disabilities: The missing voices in India's HIV/AIDS response

The open access, peer reviewed online journal 'Research & Humanities in Medical Education' (RHiME) published my review article on people with disabilities and India's HIV response. Here's the abstract:

India has the third largest number of people living with HIV in the world. The UNAIDS Gap report has identified twelve risk groups that are especially vulnerable and have been left behind from the national AIDS response. Of these twelve, one is persons with disabilities. Disability is both a public health issue and a human rights issue; persons with disabilities are the world’s largest minority. Low awareness, sexual abuse, and lack of access to health services are the major reasons for people with disabilities being vulnerable. While the gap report is a landmark report, in that it compartmentalizes the risk groups, disability cannot be looked at in isolation. Since any of the other risk groups may include persons with disabilities, the issue is a complex one meriting greater attention. The National AIDS Control Organization has completely ignored this group of persons. To efficiently close the gap, an integrated and disability-inclusive HIV response is needed so that people with different types of disabilities, their caretakers, healthcare professionals and society are empowered to fight the collective battle against HIV/AIDS.

Full article can be read at the following link:

Singh S. India’s AIDS response: the missing voices of persons with disabilities. RHiME [Internet]. 2015 Jan 12 [cited 2015 Feb 14];1:[about 8p.].

Study on Physical Disability and Identities of Resistance

Stacey L. Coffman-Rosen writes:

"Dear friends,

I apologize in advance for cross-posting.

I am a doctoral candidate in Human Development at Fielding Graduate University located in Santa Barbra, California. I am conducting an IRB approved study for which I am seeking participants.

I wish to interview women between the ages of 18-50 who meet the following criteria:

(1) have a visible physical impairment; (2) self identify as disabled; (3) consider disability an important part of their identity or self concept; and (4) were diagnosed with a physical impairment by the age of 6.

This research focuses on how women with physical impairments develop positive identities that incorporate disability. The purpose of this exploratory qualitative research study is to examine the narratives and life stories of women with visible physical impairments who self-identify as disabled and demonstrate identities of resistance. This research may impact the process and understanding of social identity development in the lives of women with physical disability. Through narrative inquiry (life stories), disabled women’s voices will be heard in both their complexity and discursiveness. These voices are not the passive stereotypes of disability, but an emerging resistance that may potentially revolutionize how women with disabilities feel about their lives, bodies, and ultimately, themselves. I hope that the knowledge shared by participants will help advance knowledge in disability studies and influence the practice of psychologists, and other paraprofessionals in mental health.

Participants will answer questions related to their current conceptualization of disability and the role of intersecting social identities in the creation and maintenance of identity and self-concept. Participants will be asked to describe positive and negative aspects of living with impairment/disability. Participants will identify situations where they have agency and autonomy.

Interviews (which should not take longer than 2 hours) can be conducted in person (I can travel to you if you are located in the Central Florida/Greater Orlando area), by telephone, or by Skype/webcam. Participant language and communication styles will be accommodated. I would be happy to provide a copy of the interview questions and the informed consent form (ICF) in advance of the interview.

If you fit the study criteria and would be willing to continue directly to the survey, please click on this link:

https://www.surveymonkey.com/s/disabilityidentity

The survey is short (15 questions) and contains more information about the study and an informed consent.

If you would like more information about this research, please contact me at the email address scoffman@email.fielding.edu I will send you more information about the study, including the informed consent (IFC) and the interview questions. The interviews have been running between one to one and a half hours.

Thank you in advance for your time and attention to this posting."

Stacey L. Coffman-Rosen, Doctoral Candidate
Human Development
School of Human and Organizational Development
Fielding Graduate University
356 Copperstone Circle
Casselberry, FL 32707
(407) 699-1491

Amrita Gyawali: Wheeling up the ramp

Nepal. Upon seeing glamorous shots of 21-year-old Amrita Gyawali on Cybersansar—with her deep-set eyes and perfect smile—many would contend that she is one of the prettiest girls on the website.

However, only a few would know that this is a young lady who has dedicated herself to challenging social assumptions regarding women with disabilities, a young lady who has not let her personal afflictions stand in the way of her ambitions.At a time when people with disabilities are struggling to be included in various fields and professions, Amrita has taken matters into her own hands and established herself as the first model in Nepal’s fashion industry—in a wheel-chair.

Besides having 40 photographs published on the Cybersansar website, Amrita has also modelled in a ramp show organised by the Namuna College of Fashion and Technology.

Although one wouldn’t know it to look at her, considering her cheery disposition, it has taken an incredible amount of heartache and pain for Amrita to get to this point in her life. When she was 3, she lost her entire family—both her parents, her brother and sister—in a horrific bus accident in Lucknow, India. Amrita, who was the only one in her family to have survived, suffered a severe spinal injury that bound her to a wheel-chair forever, unable to walk or stand. 

She was then taken to the Jorpati-based SOS Children’s Village, an international charity that funded homes for children in various parts of the country, with one dedicated to children and young people with special needs. While these circumstances would have been enough to shatter anyone else in her place, Amrita has shown tremendous determination in trying to overcome the tragedies of her past and move forward. She now stays at the SOS Girl’s Hostel in Naxal and is pursuing a bachelor’s degree in Sociology and Psychology at Tri Chandra College. 

As for the idea of modelling, Amrita describes being intrigued by the thought since she had been in the 9th grade. However, it wasn’t until after completing her plus two exams that the idea started taking concrete form. She recalls telling her friends about her plans, and they were instantly supportive.

One of these friends was Rama Karki, who is also a counsellor and nurse at the SOS Children’s Village. Rama has been in Amrita’s life for many years now, having seen her through some traumatic times, and the two are very close, almost like sisters. In fact, it was Rama who asked the owners of Cybersansar if they could feature Amrita on the website. Consequently, Amrita had her first photo published on the site in February of last year.

“Amrita is not only beautiful, but she is bold and confident too. Her confidence was one of the things that persuaded us to give her a chance so that she could inspire others like her to come forward,” said Abhinav Kasaju, Cybersansar’s founder. He adds that Amrita’s photos, which feature her donning a variety of jewellery, have proved quite popular with visitors to the site. 

Following this, Namuna College of Fashion and Technology offered her a spot in their fashion show last September. Although she was meant to be included with the regular models, the team decided to incorporate a different segment in the show dedicated to children with disabilities after talking to Amrita—’Dresses for Special Need Children’. 

The segment featured, along with Amrita, eight other wheel-chair users. “At first, I was a bit nervous because it’s generally assumed that modelling is only meant for tall and slim people. But when I came onto the ramp on my wheel-chair, the applause I received and the sense of support I got from the audience was very reassuring,” Amrita says. 

Despite the relatively warm reception that she’s gotten from the industry and the public so far, Amrita isn’t too sure she wants to pursue modelling as a full-time career. Talking about her recent experiences, she says, “There is still a massive difference in this field between regular and differently-abled models. Whether it has to do with sharing photographs on commercial sites like Cybersansar or taking part in ramp shows, it’s very difficult for us to get the same kind of opportunities as the others.” 

Amrita is currently involved in a number of activities aimed towards the upliftment of women with disabilities. She holds the view that in terms of advocacy on disability, although moving from a welfare approach to a right-based approach is challenging, it is also necessary. 

Disabled individuals—regardless of whether they are men or women—needn’t shy away from society and shut themselves out. If you look hard enough, she says, you will find that people are more supportive than you’d ever expected. 

Offers are still coming in. Amrita has just recently wrapped up a photo-shoot for a fashion collection centre at Chabahil; her image will soon be featured on a billboard in the city—something she is looking forward to. She has also been offered parts in a number of music videos by Nhyoo Bajracharya and other singers. For someone who had every reason to give up, Amrita’s show of strength is a rare and beautiful thing.

Source: The Kathmandu Post

Keeping You Abreast; Breast Cancer Awareness Handbook

E-Book or Download

Living with a disability does not make a female immune to the risk of breast cancer. On the contrary, studies have shown that there are higher rates of death related to breast cancer among women with a disability, even when diagnosed at the same stage as women without a disability.

Having regular mammograms can lower the risk of dying from breast cancer.But DO NOT think that breast cancer is a death sentence. Rather it is a wake up call. It makes you aware of the fact that how fragile life can be. But at the same time do not forget that that there are no shortcuts with breast cancer.It is high time that you should become aware of the things that you have to do in order to survive. You have to be your own advocate. With the help of this handbook learn how examine yourself. THIS IS YOUR HEALTH AND YOUR LIFE.

Unfortunately, till now, there has been no accessible information for the breast cancer prevention, breast cancer self examination and breast cancer awareness in our country for the women with disabilities.

I am glad to announce that this is for the first time such information has been compiled here in our country. Cross the Hurdles has prepared a Handbook for the women with disabilities and their care providers so that their breast health is properly taken care of. It is available in both Hindi and English for the reader's convenience.

This information is available in accessible format in the form of E-Book uploaded on website. You can read it online or Download it easily.

For further information write to: crossthehurdles@gmail.com

Abha Khetarpal, 

President,Cross the Hurdles

Raise Your Hand

RAISE YOUR HAND IF YOU BELIEVE EVERY GIRL HAS THE RIGHT TO AN EDUCATION

Globally, one in three girls around the world is denied an education by the realities of poverty, discrimination and violence. Every day, young girls are taken out of school, forced into marriage and subjected to violence.

We need your support to ensure millions more girls get the education, skills and support they need to move themselves from poverty to opportunity.

International Day of the Girl Child 

October 11th 2012
Raise Your Hand today to help break down the barriers to girls’ education. 

Raise your Hand at:

· Children with a disability are less likely than their peers without a disability to start school.[i] 

· Children with a disability who do go to school have much lower rates of staying and succeeding in school.[ii] 

· 1/3 of the world’s 72 million children not in school have a disability.[iii] 

· Children with an intellectual or sensory disability are the least likely group to attend school.[iv] 

· Disability has a stronger impact on school attendance than gender.[v]

· People with a disability who do not attend school as a child are more likely to live in poverty as an adult.[vi]

· Children with a disability who do attend school are more likely to be educated in targeted specialised settings which may reinforce their marginalisation.[vii] 

Children with disabilities are less likely than their peers to start school and have lower rates of staying and being promoted in school[viii]



Sources: Plan; CBM 

References:
[i] World Report on Disability (2011), p. 225. 
[ii] World Report on Disability (2011, p. 225. 
[iii] J. Balescut and K. Eklindh, “Historical perspective on education for persons with disabilities” (2006), quoted in the UNESCO Education for All Global Monitoring Report 2007. Quoted in UNSG’s Report on CRC p. 9. 
[iv] WHO &World Bank. (2011). World Report on Disability, p. 207. Retrieved from http://www.who.int/disabilities/world_report/2011/en/index.html 
[v] Filmer, D. (2005). Disability. Poverty and Schooling in Developing Countries: Results from 11 Househole Surveys. World Bank Social Protection Paper No 0539. Retrieved from http://hpod.pmhclients.com/pdf/filmer-disability-poverty.pdf 
[vi] WHO &World Bank. (2011). World Report on Disability. Retrieved from http://www.who.int/disabilities/world_report/2011/en/index.html 
[vii]Stubbs,S. (2008). Inclusive Education Where There Are Few Resources. Retrieved from http://www.eenet.org.uk/resources/docs/IE%20few%20resources%202008.pdf 
[viii] . Conclusion & Recommendation World Report on Disability, p. 225.

Infertility: Why can’t we classify this inability as disability?

Here’s a paper jointly written by Abha Khetarpal (Non-institutional expert, Enabling Unit) and myself (Founder, InfiniteAbility; Coordinator, Enabling Unit) on infertility as disability.

Khetarpal A, Singh S. Infertility: Why can’t we classify this inability as disability? Australas Med J. 2012;5(6):316-321

Disability is a complex phenomenon. It reflects an interaction between features of a person’s body and features of the society in which he or she lives. International Classification of Functioning, Disability and Health (ICF), lays stress on the functional as well as the structural problem of a person. All the definitions of disability also include the disorders of the reproductive and endocrine system. So infertility and impotency should also be included in the category of disability. It affects the participation in areas of life and can have a disabling affect on an individual. Like any other disability the couple has to adapt and integrate infertility in their sense of self thus infertility comes as a major life crisis. Medically, infertility, in most cases, is considered to be the result of a physical impairment or a genetic abnormality. Socially, couples are incapable of their reproductive or parental roles. On social level, infertility in most cultures remains associated with social stigma and taboo just like the social model of disability. Couples who are unable to reproduce may be looked down upon due to social stigmatisation. Infertility can lead to divorces and separation leading to a broken family life. Without labelling infertility as a disability, it is difficult for the people to access services and welfare benefits offered by the government. Infertility treatments are highly sophisticated so they are very expensive and are even not covered by insurance and government aid. In the light of all this it becomes imperative to categorise infertility as disability.     

Read the full article here on PubMed Central.

Statement of Women with Disabilities at COSP CRPD

Statement of Women with Disabilities at the UN Conference of States Parties to the Convention on the Rights of Persons with Disabilities September 13, 2012

We, women with disabilities and our allied sisters attending the CRPD COSP, hereby make this preliminary statement of principles:

Following the official sessions of the Fifth Conference of States Parties to the United Nations Convention on the Rights of Persons with Disabilities (COSP) on September 13, 2012, many of us gathered and support the below statements of principles.

• We strongly believe that it is essential to consider the multiple and intersecting dimensions of the lives of women with disabilities as these intersecting identities can exacerbate the discrimination and gender-based and sexual violence we experience;

• References to women with disabilities always include girls and younger women with disabilities;

• We will gather together at each COSP as a collective to ensure that our rights are included, in our own voices, by our own hands and through our own lived experiences so that others do not speak for us at future COSP sessions;

• We demand that girls and younger women with disabilities are included as leaders and have opportunities for mentoring to assume roles as leaders in our movement;

• We demand that the input of all women with disabilities must be included, regardless of our disabilities and that accommodations and supports to enable our effective participation will be available at no cost as we reject any notion of a hierarchy of disabilities within our movement;

• We will also gather to strategize on approaches for sharing effective actions beyond the COSP sessions themselves, in an effort to ensure the sustainability of our work together;

• Each session of the COSP must include dedicated sessions on women with disabilities and speakers must be women with disabilities, with special attention to presentations by women with disabilities from the global south and younger women and girls to empower more leaders of our movement;

• Women with disabilities ourselves should be at the forefront of designing formal sessions at the COSP addressing issues of concern to women with disabilities, including designation of specific issues to be addressed;

• Effective advocacy should be undertaken to ensure that women with disabilities have sufficient fiscal resources to attend the COSP so that we ourselves can present our concerns, experiences and solutions;

• The CRPD Committee should ensure that each and every State Party report to the CRPD Committee include a detailed and comprehensive discussion of the implications of all CRPD articles for women, in addition to Article 6 on women itself;

• To this end, the CRPD Committee should undertake a review of its Conclusions and Recommendations regarding State Party Reports to ensure the inclusion of issues concerning women with disabilities;

• The CRPD Committee is requested to develop, with the input of women with disabilities on the ground, a General Comment on CRPD Article 6 on Women, as well as discussion of other CRPD Article references to women with disabilities;

• The CRPD Committee and the Committee on the Convention on the Elimination of Discrimination Against Women (CEDAW Committee) are requested to collaborate and coordinate their reviews of States Parties Reports on their respective Conventions;

• As a collective we also will work to ensure that issues of concern to women with disabilities are on the agenda of several United Nations entities and mandates, including but not limited to the following:

         1. UN Women;

         2. UN Commission on the Status of Women;

         3. CEDAW Committee;

         4. Committee on the Elimination of Racial Discrimination;

         5. Committee on the Convention on the Rights of the Child

         6. Committees monitoring compliance with other human rights conventions;

         7. Special rapporteurs, including for example: the Special Rapporteur on Violence Against women     (Rashida Manjoo who has given special and unique attention to women with disabilities in her work), Education, Health, Food, Water, Housing, missing persons, trafficking, etc. because many such mandates have failed to discuss women with disabilities in their annual reports;

        8. UN entities and mandates addressing United Nations Security Council Resolution 1325 and succeeding  resolutions on Women, Peace and Security which generally have not included women with disabilities in these resolutions and related policies and implementation;

• We request that this statement is included on the UN Enable website as part of the Outcomes of the Fifth Conference of States Parties for the UN Convention on the Rights of Persons with Disabilities. 

Stephanie Ortoleva of 'Women Enabled' convened this meeting. Women Enabled is an education and advocacy project developed by Stephanie Ortoleva to bring attention to the urgent need to advocate for the human rights of all women and girls and to include women and girls with disabilities in international resolutions, policies and programs addressing women’s human rights and development.  Stephanie is an international human rights lawyer, researcher, educator   and advocate for the rights of women and for the rights of persons with disabilities worldwide.