‘If I regarded my life from the point of view of the pessimist, I should be undone. I should seek in vain for the light that does not visit my eyes and the music that does not ring in my ears…I should sit apart in awful solitude, a prey to fear and despair. But since I consider it a duty to myself and to others to be happy, I escape a misery worse than any physical deprivation.’
Helen Keller, hearing and visually impaired
I know my family loves me, but they always make me feel like I can’t achieve anything on my own.
You aren’t alone! The overprotection that families often exercise over a woman with a disability can have damaging consequences for her self-esteem. This may be your family’s way of telling you that they love you. But when love becomes smothering or baby-ing, it can be hard for you to feel like an independent person who can do things on her own. For example, a woman who is visually impaired may go to parties with families or friends who won’t let her dance or even serve herself food. Or a girl in a wheelchair may find that when a guest asks her a question, her family jump in with a response before she has the opportunity to reply. Much of this ‘over-help’ has nothing to do with these women’s disabilities, but relates to the myth that people with disabilities must constantly be cared for, and cannot function as independent human beings. You can have a look at this booklet on disability etiquette for more information.
Here’s some advice from counsellor and sex therapist Deepak Kashyap: ‘What can help you is ignoring what is going on around you, and sitting down with your loved ones and telling them, in whatever way you can, that “I can take care of myself, and when I need help I’ll ask. I recognise that because of who I am and where I am in life I might need more help in certain areas, so I will ask you when I need you. But if I don’t then I will not.”‘
Ever since I became disabled, I find it really hard to think positively about myself.
Experiencing a change in the way you see yourself is very common amongst people who have acquired disabilities later in life. People may feel badly because of diminished competency in certain areas, unconfident about their physical appearance, humiliation at needing assistance, and an overall low sense of self-worth.
Says counsellor for visually impaired young adults, Neha Trivedi: ‘If you acquired your disability later in life, you have the same assumptions about your impairment that society does. You were a part of society which assumes that being nondisabled is an advantage over having a disability. So when you acquire a disability, you are viewing yourself as society views a disabled person. It is the process of you shifting from being the outsider to being the insider.
What you must do is try and understand that your disability is a functional issue, rather than an identity issue. Because as long as you see your disability as a part of your identity [who you are as a person], it’s hard to feel good about yourself. The minute you can separate it out by saying, “This is another physical condition that I could have developed, like asthma or TB or any other disease,” you can start to see yourself as separate from your impairment.’
However, it’s not always easy. Some women may experience depression, which is a medical condition that requires professional help or advice. The WHO identifies depression as the leading cause of mental disability worldwide. Symptoms of depression include a complete loss of interest or pleasure, feelings of guilt or low self-worth, disturbed sleep or appetite, low energy, or poor concentration. Says counsellor and sex therapist Deepak Kashyap: ‘When we get used to certain things in life that we believe will never change, we tend to attach our self-worth to them. For example people think, “It’s only when I have hands I’m beautiful. Or when I have beautiful eyes that I’m pretty.” And if the person meets with an accident and has scars on their face, they can go through not just sadness, but depression, for a very long time. What happens in such cases is that you may need therapy, because just advice won’t help. With therapy, someone can help you detach your self-worth from your body. Because self-worth resides in nothing apart from the way you think about life. It doesn’t reside in your ear, it doesn’t reside in some cells in your brain; it resides in the perception. It is really important to go through therapy if you’re going through depression, so you learn life-long skills to deal with your problems, and not just quick fixes.’
Is going through counselling the only way to feel better about myself?
We all need validation or support – be it from a counsellor or a caregiver, a family member or a friend. Talking to someone you trust, who offers you encouragement and helps you see yourself in a positive light is something that everyone needs – whether or not they have a disability. If you are facing a problem like depression where you may need to see a counsellor, remember, it’s okay. Counsellors are just another type of doctor, and there is nothing shameful or embarrassing about visiting one. Here is an Indian article that breaks down some common myths about counselling.
Says counsellor Jyotti Salva: ‘You don’t always need counselling – it depends from person to person. Very often what happens is that if you have someone supportive around you, or a good caregiver, a lot of these issues get ironed out. But this also has to do with how you were treated as a child, because while growing up, receiving positive messages plays a very crucial role. If you received a lot of positive messages at different stages in life, you probably have a higher resilience – the inner capacity to deal with these things. Then all other constraints (including your disability) become secondary, because your beliefs are strong enough.
Maybe yes, this is one area where you are finding things difficult, but you have a lot of other skills and things you are good at. And whatever your talents, faults or impairment, these things are different from you as a person. People who have grown up with that sense of self-worth, it’s easier for them to deal with something like this. Other people may need many sessions of counselling to feel good about themselves. It’s really different for different people.’
My teenage daughter, who is disabled, is really moody a lot of the time. Is there anything I can do to help her?
Adolescence is a time fraught with anxiety for all teenagers – irrespective of whether they have a disability. Fears about social interactions, sexuality, bodily and hormonal changes, and attraction are common anxieties experienced during the teen years. Says counsellor Jyotti Savla: ‘This is a time when she is struggling with her own sexuality, and will want to understand what is happening to her. Teenage girls are completely confused about the changes in their bodies, and are beginning to experience mood swings, so they may experience a lot of irritability due to this. And because of hormonal changes the whole factor of infatuation and desire comes in, but they’re not supposed to talk about any of these things with anybody. And because there is so much secrecy around these issues, it becomes very suffocating for them to deal with it on their own. How many parents are comfortable sitting with their child and explaining what is happening to their bodies and sexualities? So what you as a parent can do is be open with her, and help her understand what she is going through. Lack of family support often makes depression at this age worse, but talking to her openly and honestly can really help.’
However, given your daughter’s disability, her teenage years may be compounded with existing issues. If she has a physical disability, she may experience unwanted stares, attention, or taunts from her peers because of her impairment. So the changes to her body and feelings during puberty may add to her existing insecurities and worries. If she has a developmental disability, her experience of adolescence may be either premature or delayed, and she may have trouble grasping many of the changes that are occurring within her body as well as her social environment. For more information and resources on puberty and developmental disabilities, look at the second question on the Knowing Your Body page.
Is it better to pamper my daughter or leave her on her own so she can become independent?
As a parent you may be tempted to make sure that every detail of your daughter’s life is as perfect as it can be. Many parents try and compensate for feelings of guilt or pity in relation to their child’s disability by giving them special treatment. However, this can be damaging to your daughter in the long run. There’s a difference between ‘practical support’ and ‘over-help’, and you need to strike a balance.
Says Mumbai-based counsellor for the hearing impaired, Geeta Rao: ‘Excessively praising girls and women with disabilities often means that they will grow up with an unrealistic idea about themselves and their skills. This can impact negatively on their self-esteem when they go out into the world and encounter people or situations that contradict their self-image. Being realistic from the start is the best that you can do for a young woman’s self-esteem.’
Counsellor Neha Trivedi adds to this: ‘It’s about finding the middle ground. Sometimes families focus only on the child with a disability, which is disadvantageous not only for the other children, but for the child herself. Because over-pampering means that your daughter will grow up always having someone around to do stuff for her, and will never learn to be independent. So what you need to do is not treat her as a girl with disabilities, but all you have to do is cater to her specific needs. A functional approach is best.
So for example, if your daughter is visually impaired, make sure you’re verbal around her. Because she may know you’re around, but won’t know what you’re doing. So to make this process of learning happen, be verbal. Constantly say stuff like, “I am in the kitchen, I am frying onions,” because this is the way she will pick up information that a sighted child would do. As long as you don’t get into either over-protecting her or completely neglecting her, she can grow up with the same information and confidence as your other kids.’