Disability is not limited to the body, it is also about mindsets

Shobha Shukla *

Very often it is our disabling attitudes that make life difficult for people with disabilities, rather than their own physical impairments. More than the disability itself, it is its psychological effects that take a bigger toll on the person, says wheelchair bound Tanzila Khan, a disability rights activist who founded GirlyThings.pk.

Tanzila shared her anguish in lead up to the International Day of Persons with Disabilities, while delivering the plenary talk at the 11th virtual session of the ongoing 10th Asia Pacific Conference on Reproductive and Sexual Health and Rights (APCRSHR10).

"Persons with disabilities struggle a lot with their identity. We do not find ourselves fit in society. All the buildings are made accessible only to the able-bodied. The same applies to policies and legislation. Sometimes attitudes can disable an entire nation or community that has a perfectly able-body with no impairments", she said.

There are 690 million persons with disabilities in the Asia Pacific region. While many countries of the region have focused on improving access of persons with disabilities to employment and education, limited attention is given to their sexual and reproductive health needs. Sexual and reproductive health rights of women still remain a taboo subject and the challenge becomes even bigger in the context of women with physical disabilities. Any talks around this important issue are difficult to digest for many people, including policy makers and leaders. Even healthcare providers very often turn a blind eye to it.

The insensitive attitude of service providers is a major hindrance for persons with disabilities in accessing sexual and reproductive health services. In Nepal, young people, especially women, with disabilities face several problems on this front, shared Shibu Shrestha, who is a senior programme manager at Visible Impact. As it is, the unmet need for family planning in Nepal is high for young women. On top of this, it is assumed that those with disability are either asexual or not sexually active and therefore do not need sexual and reproductive health services like family planning.

According to one study, persons with disabilities in Nepal are twice as likely to be on the receiving end of inadequately skilled healthcare providers at improper facilities. They are three times more likely to be denied healthcare and four times more likely to be treated badly by healthcare systems.

In another recent study conducted on young persons with disabilities in 3 cities of Nepal (Kathmandu, Sunsari and Nepalganj) participants shared that the attitude of the health service providers was judgmental and not friendly when young people sought family planning services, to the extent that the service providers often remarked- "Even these people need these devices?"

The study participants were hesitant to share about their behaviour and perceptions regarding family planning. All of them said that such family planning issues were still not discussed in the open. No wonder they had limited knowledge of family planning methods, with the male participants stating that the main family planning method among the unmarried was the emergency contraceptive pill.

While all agreed that decisions on the usage of family planning methods should be made through consensus among the couples, the female participants highlighted that men are usually the sole decision makers for the type of the family planning method to be used after marriage.

"When there is no discussion, there is no question of decision. But, they (males) offer to buy us the 'morning-after' pills the next day, and we have to agree as we do not have other alternatives. We do not have the confidence to buy contraceptives, so we willingly allow unprotected sex", said a female participant.

Another woman with disabilities in Kathmandu confided that, "Once when I went to buy vaginal tablets, the pharmacist looked at me in such a way as if I have committed a murder. Since then I have never gone to buy any contraceptive device on my own."

Myths associated with contraceptive use also exist. Many persons with disabilities think that condoms and intra-uterine devices do not give sexual satisfaction, or that vasectomy makes a man sexually weak. If this is the attitude and level of understanding in the big cities, one can imagine the situation in small towns and rural areas.

Shibu wants all information and services for persons with disabilities to be equipped with accessibility standards - like provision of ramps, larger bathrooms with grab bars, lowered examination tables, easy to read versions, sign language interpreters, tactile communication provision, audio formats and braille script, including pictorial form for persons with intellectual disabilities and autism disorder.

Srei Chanda, who is a research scholar at the International Institute for Population Sciences, did a study in two metropolitan cities of India which explored the plight of people with acquired locomotor disability due to lower limb amputation (as a result of accidents or some underlying health condition). According to Srei, amputees not only have to battle physical, psychological, social and economic changes, but their sexual and reproductive health needs also remain largely unaddressed.

One person who had a below-the-knee amputation said: "One cannot share every thought with one's mother. You also need support of friends to share certain issues. Being disabled, it is difficult to share the thought of sexual need and desire even with my friends."

Another young female, who had undergone bilateral below-the-knee amputation, shared that her husband left her when she became pregnant. When she went to the hospital for her delivery the healthcare personnel said, "You don't have legs, we cannot take the risk of delivering your baby."

"Although I did not have much trouble in the whole process of delivering the baby, the words like 'no' or 'limbless' were the only trouble I felt indirectly from every other person", she said.

Phyu Nwe Win, Magazine Editor Colorful Girls Myanmar, says that in her country, persons with disabilities especially young women and girls, have high unmet sexual and reproductive health needs. This is mainly due to false perception that they lack sexual desire and therefore are unlikely to have such needs. This inhibits them from even talking about sexual and reproductive health related issues.

They are stigmatised and excluded from comprehensive sexuality education programmes due to lack of perceived need. Even when included in educational activities, they face barriers as materials specific to their needs are unavailable. Myths and misinformation around sexual and reproductive health are rampant and result in adverse outcomes for women with disabilities - like forced marriages, domestic and sexual violence, and lack of power to negotiate for safe sex that leads to unintended pregnancies and sexually transmitted infections, said Phyu.

These are some of the heart wrenching ground realities faced by persons with disabilities. But there are some sparks of hope too. As shared by An Nguyen, Vietnam is one such country that offers a good practice example. An Nguyen is currently doing her PhD from Monash University in Australia and has a physical disability due to polio.

Vietnam is fairly progressive in terms of sexual and reproductive health services. Most people can easily access contraception and reproductive health is discussed openly. Government policies actively promote reproductive rights. The recently implemented Disability Law has brought about a number of positive changes for persons with disabilities.

An's study on "Accessing Reproductive Health Care Services For Women With Physical Disabilities In Ho Chi Minh City" found that most women with disabilities have had a positive experience when accessing healthcare services. Participants reported that healthcare providers are sensitive and knowledgeable about their needs and physical infrastructures have improved.

Infrastructure improvements included provision of ramps, lifts, and wheelchairs at health clinics. Government healthcare cards for people with disabilities entitled them to reduced fees or even free services, depending on the extent of their disability. All this has helped the persons with disabilities to take good care of their health.

However, some minor irritants still remain - like in some hospitals toilets are inaccessible for wheelchair users; parking is far away from the main entry gate and parking of three-wheel motorbikes is not allowed.

"Access of women with disabilities to reproductive healthcare could be further improved by improving the capacity and knowledge of local governments to better operationalise the laws. Also, there is scope for further improvement in policies. Even though the law on disability recognizes the rights of persons with disabilities, the national guidelines on reproductive healthcare services currently do not have specific guidelines for them", says An.

In Pakistan, Tanzila's drama production company, Creative Alley, is using innovative ways to highlight the issues of persons with disabilities at policy level and also to sensitise the general public. Her "Theatre of the Taboo" is a training module that uses theatre as a problem-solving technique on issues related to sexual and reproductive health and rights.

"Our theatre makes the audience become the actors in the play. We let them address their own biases and this has proved to be an enjoyable technique. We also try to bring all communities together and not just the persons with disabilities, as this is likely to alienate them", says Tanzila.

She has also founded "GirlyThings", a mobile App that provides home delivery (to women and girls with and without disabilities) of products related to women's health and menstrual hygiene, including sanitary pads. It empowers women to take care of their menstrual health and hygiene by themselves by providing instant access to feminine healthcare-related information and products, which women might otherwise be unable to buy directly from the shop, either because of their physical disability and/ or they might be hesitant to buy from the shelf because of the inherent taboos and stereotypes around such products.

Tanzila insists that the best way to empower persons with disabilities is by mainstreaming them and treating them as our equal and not as beneficiaries of our charity. We all need to adopt the lens of inclusivity and make sure that we do not have a disabling attitude towards anybody, regardless of the impairment of their body, or their background, or any other identity that they have.