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Submitted by PatientsEngage on 16 December 2020

Abha Khetarpal talks about the dismal lack of awareness about the Sexual and Reproductive Health of disabled women and how almost nothing is done to mend it. She is President – Cross the Hurdles, and a Member of the Sexual Harassment Committee, Department of Disability Affairs, Government of India, an author as well as a professional counselor. 

What do you think are the principal challenges for women with disabilities as far as sexual and reproductive health is concerned?

The challenges are in the form of various barriers that they have to confront:

Physical barriers : These may include a lack of accessible transport, physical accessibility of health care premises, inaccessible medical equipment like mammogram machines, examination tables, etc.

Lack of information : There is absolute dearth of proper, relevant, and accessible information regarding sexual and reproductive health and rights of women with disabilities.

Providers barriers : Medical healthcare professionals many times do not have adequate training and understanding of disability issues. They assume that women with disabilities are sexually inactive and so ignore the sexual health issues that may concern them.

Financial barriers : Because of poverty, women with disabilities have to remain without essential medical treatment. In India there is no medical insurance for persons with disabilities.

Personal barriers : There is a lack of education. There is no one to talk to about sexual health and they are hesitant to talk about this issue because of the fear of being judged.

Because disability is a topic that is being discussed today in some regard, do you think there has been a perceptible change both in attitude as well as ground level work? If so, how? If not, why not?

Yes, of course, there has been a change in attitude towards disability and groundwork, though a very gradual one and quite less than satisfactory. The change has mainly been due to rights based advocacy, increased awareness among people, and social media platforms where people from all over the world come in contact with each other. Rights of Persons with Disabilities Act 2016 has also been quite instrumental in bringing about many changes.

How much attention is paid to the sexual health of women with disabilities? Is it mere neglect, or are doctors not even equipped to handle it?

As mentioned earlier, sexual and reproductive health of women with disabilities is a neglected area.  Women with paralysis, impaired motor function or obvious physical disability are rarely offered contraceptive methods or even information about it. Of equal concern is the fact that in many places, women with disabilities are routinely turned away from such services should they seek help, often also being told that they should not be pregnant, or are scolded because they have decided to have a child. In India, women with physical disabilities do not receive reproductive health services because they are considered to have no marriage prospects and sexual activity outside marriage is not acceptable. Many are subjected to forced sterilizations, forced abortions, or forced marriages. There is limited literature available on SRH needs of women with disabilities in India.

How does a disabled woman suffer if her sexual health is neglected? Can it be actually detrimental to her physical/mental health?

Definitely yes. The risk factors of secondary health conditions and various kinds of reproductive tract infections and cancers are the same for women with and without disabilities. This may lead to loss of overall well being and mental health issues including depression, anxiety, frustration, and other issues.

Listen to Abha in the video below 

How have you been promoting the sexual health of women? What are the hurdles you have faced?

I have been working in the area of disability and sexuality since long. I am a professional counselor. I have developed three handbooks for women with disabilities on breast cancer self examination, menstrual management and hygiene and on sexual and reproductive health and rights of women with disabilities. Apart from this, I have written a number of articles on the same issue to bring awareness among both people with and without disabilities. I also run an online course in Comprehensive Sexuality Education.

I being a woman with disability have faced many hurdles while accessing sexual and reproductive health services for myself. After 50 years of age, women are recommended to go through breast cancer screening but there are no such facilities available for disabled women. Getting gynecological examinations done is not possible without compromising my dignity and privacy as I would have ot to be carried to examination tables. Even wheelchair accessible weighing machines are not there in our country.

How have you tried to overcome the challenges?

Challenges still remain. I try to keep myself healthy with a good diet, hygiene and exercises. I try to remain well informed about various methods of contraception. Breast cancer self examination is helpful to me though it can not be a substitute for medical examination.

What according to you are the most important facets of sexual and reproductive health of disabled people that need to be addressed?

Honestly speaking each and every facet of sexual and reproductive health is important for everyone, persons with and without disabilities. Though there may be some changes in sexual functioning because of some disabilities but on the whole it remains the same for everyone.

How do the issues differ between disabled men and women?

Here I would not like to talk in binary. We may not forget about individuals of other genders. There are different kinds of issues for everyone. People with disabilities belonging to sexual minority community are marginalized the most. Many times how people experience disability gets overlapped with their gendered experiences. For example a lesbian with disability belonging to lower caste would face multiple challenges even while making friends.  For her there can be domination of factors such as ableism sexism and casteism.

Men who have acquired disability, like spinal cord injury, limb amputation etc go through a phase of grief, as they feel that there is the loss of their ability to physically embody certain masculine characteristics such as agility, strength, and flexibility.

As far as sexual and reproductive health is concerned each group has to face unique challenges.

What is your advice to young disabled women and parents of disabled children?

Awareness and sensitization is the key. Information is all empowering. Young disabled women need to talk about issues concerning them rather than remaining hesitant. They can talk to some trusted adult in family or school. Apart from self care or self grooming, they also need to take care of their nutrition and if possible they need to do physical exercises as recommended by their doctors.

For parents of children with disabilities, I would like to recommend them to provide their child with sexuality education, teach them proper names of body parts and help them in recognizing personal boundaries in relationships as well as teaching them to keep themselves safe and be wary of unsafe touches.

Link to resources

Handbook on menstrual management and hygiene for women with disabiilties

Breast self examination for women with disabilties in English and Hindi

Comprehensive Sexuality Education for women with disabilities