Disability in India and a short rant from me
You have a, lets say, ten year old daughter who is deaf. You live two hours outside of a main city and you rarely go into town because the rickshaw is too expensive. As your daughter grows up, you cope the best you can.
When your daughter was six, you sent her to the local village school where she sat idol, unable to hear and unable to learn. When she got home she was frustrated and angry. She could not communicate, she could not speak and she could not tell you that someone pushed her over in the lunch queue.
Tears streamed down her face and all you could do is hug her. You do not know how to let her know, 'everything will be OK.' Neither you nor your daughter can read or write, and without words, you are unable to communicate.
Eventually, your little girl stops going to school altogether. It seems like a waste of time. It's all too difficult. She stays at home instead not learning and not developing. Her future seems bleak.
There is a government scheme available to you though. Your child can get a disability certificate which will entitle her to a disability pension of 500 rupees (£5.60) a month, a ration card for food and a bus and train pass. You would also have access to a housing and toilet scheme for families living with a disability. This wouldn't help with her communication or education but it would help your family live better, healthier lives.
The problem is that you haven't heard about any of these government schemes available to you. You can't read it in a newspaper because you cannot read and you can't watch it on the TV or hear about it on the radio because you don't own a TV or a radio. Your neighbours and friends do not know about these benefits either.
If you do happen to hear about the scheme, you will probably think better of it. You've heard that you would need to fill out a form and sign your name and as you can't read and write, how would you apply?
And even if you could write, you'd have to take a rickshaw into town which is expensive and take time off work to collect and drop off the form. That's two days salary you would lose. The process seems complicated and long and with loss of salary and the unknown, it's too great a risk.
An angel comes to town
Then one day, an angel comes to town. She tells you she is from a local charity and she can help your child get into a special school for deaf children, teach your family some sign language and help your family gain access to government schemes available for families with disabilities.
It's music to your ears but to get access to the schemes and benefits that you have the right to, it's a long and arduous process.You fill out various forms with the help of the charity field worker. It takes a while because she only visits once a week for an hour and there is lots of information you don't know, like the exact date your daughter was born and when you found out she was deaf. You never recorded any of this information.
After a few months you eventually have all the forms needed to attend an assessment centre so that your daughter can have the disability assessment she needs to get her certificate. Only with a certificate can you apply for the government pension and schemes.
So, this is what'll happen next. You'll take off a precious day of work and pay 30 rupees to get into town. That's a third of your wages for the day. You'll try to get there an hour early and be in line to see the doctor first. 10 am will come and go, 11am and 12 midday. The doctor you need, the one who can work the only audio metric machine in the region, hasn't turned up. At 1pm, you find out he is on leave. Nobody bothered to inform the charity workers or you. A waste of a journey and a day's salary.
The next month, you'll try again. This time, the doctor who does the hearing assessments shows up. You and your daughter are seen at 11.30. It's lucky your angel from the charity is there because you'll need help filling in the forms again and the doctor doesn't have time to help. He sees you for exactly 2 minutes, he asks a few questions, scribbles a few notes and then shouts next. The form is taken from you and that's the assessment over.
Next month, you'll take another day off work and return for the assessment results. He doesn't give them to you then and there. Instead a team of other doctors, who aren't present and haven't personally seen you or your daughter will assess her disability. They'll give her a percentage. The higher your percent of disability, the more support from the government you'll be eligible for.
Your assessment comes back as 75% disability. You're not sure why or what this exactly means for you or your daughter. Hopefully the angel from the charity can explain. Next you'll apply for the actually disability certificate and then later your pension and possibly the gas and toilet schemes too. From the time the 'angel' walked into your village to the time your daughter received her first 500 rupee benefit, it's two years. It is also countless trips to the city, days missed from work and hours spent waiting in line.
Years later, it will be worth it.You'll be getting 500 rupees extra a month, a ration food card and you'll have had a toilet fitted. You'll be worrying about food less and going to the toilet will be safer and more dignified but it will be a long and bumpy ride.
Our fight in the UK
The above highlights just some of the challenges a family living with a disability in rural India may face. When I speak to the families here sometimes they ask me what life is like for people with disabilities in the UK. I am proud to tell them about the range of services available that are provided by the NHS, charities and local groups. We are so very lucky, we don't have to fight this hard to get the diagnosis, support and treatment we need.
I am also acutely aware as I speak to these families that although it's all far far better, not everything is rosy. Our brilliant, vital and lifesaving organisations are also under threat.
We all know about the state of our NHS. It needs major reform and likely billions in investments. Our junior doctors are telling us that the system is no longer safe for patients. I stand with all the doctors and nurses who have been campaigning tirelessly to get our government to listen. They (the government) think privatisation is the answer. They are selling off our NHS piece by piece. You just have to look at America, where millions of people are uninsured, to know that privatisation is not the answer.
Then there are the charities and local groups. Our beloved charities struggling to keep afloat after government cuts and negative media coverage. Chuggers causing mayhem, telephone fundraising causing the deaths of the elderly and charity CEOs being paid far too much. It's Daily Mail drivel.
Let's remember that our charities are held accountable for everything they do. The Charity Commission is there to audit their work with the same scrutiny as any other business. Transparency is crucial if charities are to keep its supporters. All information on charities is there and laid bare to read about if you take the time to look.
I don't know the answer. I bet there are a lot of people who can afford to give to charities but choose not to. We should all, including me, try to keep giving as generously as we can. And if any of the shameful arguments outlined above are sounding familiar, then we should try and take the time to do more research and find reliable information. We must all be better. I also recommend this website www.thelifeyoucansave.org if you want to find an organisation that supports a cause you feel passionately about and to find out how far your pound will go.
Charities need our money and our kindness now more than ever. They are working in extremely tough times and they need us if they are not only to survive but also fill the gaps and cracks present in our services and social care. Both UK and international work is important.
And the government? I think we all need to pay higher taxes. Nobody likes it and nobody will do it because it's political suicide. Prices have gone up, we're leaving the EU and we still want the best of everything. Something has to give. We can't get the education, NHS and social security we so desperately want without paying for it. Would you be prepared to be 10% poorer so that your children and grandchildren as well as the most marginalised sections of our society are properly looked after?