It is not easy when you first look at your life and realise, with some bewilderment that you are the fact the parent of a child who is considered by society to be disabled.
I know that it can be a real struggle to find a place in the wider parenting community when you have a disabled child as everywhere you look there are constant reminders that the journey you’re on is a different one, and that different doesn’t always seem like something to celebrate. It can also be pretty difficult to integrate into the special needs community as battle scarred old timers regale you with stories of how they took on 5 local authority officials at once and not one of them made it out with clean underwear. With the variety of different disabilities that families can be dealing with, and then the range of abilities within each condition, common ground is often found through mutual disappointment in the world that our children are growing up in.
It doesn’t surprise me that the posts that get most interaction from the special needs community are those that focus on how wrong people get it, hitting out at a society that doesn’t seem to understand the first thing about basic consideration for the special needs child. It feels good to vent with people who understand how frustrating life can be when you feel like you have to fight for everything. But even though we as a family have had our fair share of battles, I don’t believe the world is as bad as we parents might sometimes think.
Hitting people over the head won’t help them see sense
I have some great friends. I rarely see them because I’m completely rubbish at keeping in touch, but for the most part, they remember I exist and get totally over excited if I actually manage to turn up on a night out, which I’m eternally grateful for. I have heard some insensitive things in my time as a mother, but in most instances, if I resist the urge to pounce on the perpetrator and poke them in the eyes, and actually take a moment to think, I know that the intention behind whatever has been said is kind, and that is what matters rather than the words that were chosen at the time. If I can see this when my friends talk to me, why should I assume any different when it is a stranger?
Of course I’m not immune to the crushing disappointment that comes hand in hand with someone’s complete lack of understanding, and yes at home I might just say some naughty words about quite how disappointed I am, but I have never found simply uttering expletives to do much to change things for the better, as satisfying as it might temporarily be. If we consider the fact that basic human society develops through interaction with each other, then the only way we will be able to develop a society that is inclusive is to actually go through the process of including ourselves and our children in it. The lack of understanding that we might encounter on the way, as frustrating and soul-destroying as it can feel, is often a simple as a lack of experience and education. Undoubtedly parents of special needs children have had the best education possible when it comes to understanding inclusion, thanks to our children. Even though we know that everyone we meet won’t have had the same experience, we seem to expect them to have the same level of understanding. Admittedly the frustration at having to explain that your child has the same basic rights as any other child can easily bring you to the point of wanting to wallop them over the head with your emergency medical kit, but perhaps, just perhaps we are underestimating societies willingness to be inclusive. Sometimes taking a deep breath and explaining your situation is enough to turn on a lightbulb in someone else’s head. That someone might then treat the next disabled child differently, or educate a colleague. Finding the strength to share your child can be difficult when your instincts are to protect them, but if we are not open to others, why should they be open to us?
I am thankful that I am able to get constant reminders that helping people understand some of the challenges that my family, especially Dominic, Elliot and Lilia, face does more to change attitudes than any amount of ranting would. There are plenty of people who know nothing more about my family than what they read on these pages, that take time out of their day just to show support, kindness or help me champion a cause. I don’t think that I’m especially lucky, I just think that most people plod on with their lives, facing their own challenges and don’t necessarily see the difficulties that other people are facing. By being public about our life, more people have the opportunity to learn a bit about life with a disabled child. Most of the correspondence that I receive is completely supportive, but so often people express surprise that they had no idea of some of the challenges we face.
I honestly believe that vast majority of Britain would absolutely support campaigns to protect disabled people’s rights if they only knew about them. The problem is getting heard through the filtered news that people hear. It is easy to believe that no one cares when you see the statistics for disability hate crime, or hear about people dying alone without anyone seeming to even notice. But I truly think that the majority of Britain wholeheartedly believes that we should live in a society that gives help when it is needed, look at the response to Comic Relief or Children in Need. People do care, they just need to be informed that they need to.
You need to tell the government that you care
You see, despite the government’s reassurances that they are protecting the most vulnerable in society with the current welfare cuts, it’s simply not the case.
No one is immune to illness or accidents. At some point our body is going to stop working as efficiently, or we’ll accidentally break ourselves. As things stand the government are planning to make cuts to services that disabled people rely on to maintain independent lives, without ever having assessed the cumulative impact of these cuts to the people concerned. One example of this is a fund called the Independent Living Fund (ILF) that ensures that severely disabled people can live independent lives in the community rather than being forced to be moved into residential care. The government tried to take this away fund completely. 5 disabled people challenged the decision in the Court of Appeals and the decision was over-turned on the basis that the government had not taken into consideration duties outlined in the Equality Act. This victory meant that those who are currently receiving ILF will continue to receive it, but as the government has slammed the doors shut on anyone else being able to apply for it, it leaves severely disabled adults vulnerable to local council’s decisions about how best to allocate their resources, and to resulting cuts.
These are not benefit fraudsters, they’re not work shy, they’re just human and disability happened to them, in the same way it could happen to you, or your parents, or your siblings or your children. This is something that the whole of Britain should be up in arms about, but most people don’t even know it’s going on as they are being told so many times that it’s the benefit fraudsters who are being punished by the cuts and people genuinely in need are being protected. That’s about as honest as an MP’s expenses claim form I’m afraid, but it’s a rhetoric that means people can sleep comfortably at night so most people choose to accept it.
Mary Laver recently made the incredibly brave decision to share her story to try to educate people to the realities of the cuts. She let a camera into her life to record how she would have to live if she did not have the ILF. I don’t think anyone could watch it without being utterly moved, and, if they are honest, relieved this life is happening to someone else. I was terrified that this could be in my future, or my youngest son’s when I’m no longer there to care for him. I cannot believe that anyone would ever think that it is in the country’s best interests to treat people like this. Please, if you do nothing else today, watch Mary’s video and ask yourself if it makes you feel proud that decisions are being made on your behalf that affect people in this way. And then get very angry that the government is doing this without even pausing to work out if they will leave people with enough money to survive. Then please share the information that you have just learnt. Not just with the people who you know are already campaigners and advocates for disability rights, but see if you can educate someone new today, someone who would otherwise remain oblivious to it all.
I’m hoping that some of the amazing people who I’ve had the privilege of connecting with through this blog will help me pass this lady’s message from person to person until there are enough voices making enough noise to stop the government sacrificing those it should protect. The blogging community, specifically the parenting blogging community is the perfect example of how people can rally together when a cause needs championing. Yes they’re mainly women who are largely surgically attached to their laptops and yes there can be handbags at dawn over the thornier issues of feminism… and jam… but they can also rally together in an ever-so-slightly-scary way where there is someone who needs their help. And so I’m hoping that I can appeal to those parenting blogging networks to help spread awareness of a cause that will one day affect us all, because I know that out there are hundreds if not thousands of very vocal women (and a few men) armed with incredibly loud voices. Voices that people listen to. I just need to find a way to speak to them all. So please prove my theory right that if Britain knew what was happening, there would be huge support for ensuring that those people who most need our help, get it. I truly hope it will inspire you to do everything within your power to use all the resources available to make the government listen.
And now, over to Mary.
The WoW Petition
The Independent Living Fund is now closed to new applicants. That means that there are many people out there living like Mary with no way of changing their situation, and if anything happens to you or your loved ones, there will be no support there to help you reclaim some independence. We need everyone to care, so if you have been moved my Mary’s video please show your support by signing the Wow petition asking the government to do a cumulative assessment on the impact of the cuts, something that has not yet been done. Thanks to tireless work of lots of people, the War on Welfare petition (WoW petition) has recently reached the 100,000 signatures needed to debate the issue in parliament, BUT the government doesn’t have to allow it. And what’s the bet they won’t really be that keen to be put on the spot about it either?
So please, please also write to your MP and ask them to call for a debate and then attend it. You can contact them through the ‘They Work for You‘ website. I have included a template of sorts at the end of this post (actually it’s just a copy of what I sent my MP, but it should give you a rough idea).
Please make a decision to stand up and fight for the type of society we want to live in and we want our children to grow up in. Please sign the petition, write to your MP, and then share what you have learnt with as many people as you can.
Dear [name of MP],
As I am sure you are aware the Independent Living Fund is an invaluable lifeline to people who are severely disabled. I know that recently 5 disabled people won an Appeal to over turn the decision to stop their ILF on the grounds that the government had not taken into account duties outlined in the Equality Act. This victory does not help all those people who still cannot access the fund that will enable them to live independent lives though as the fund is closed to new applicants. Without money being ring-fenced for their care they face a very uncertain future.
This is just one of the cuts that targets the most vulnerable and statistically poorest section of society. I don’t believe that Britain should be a country that fails to support those that need it the most, and certainly we should not allow cuts to be made to this section of society without rigorous assessment of the real impact they will have. Disability is not something that you chose. It can happen to anyone, and the thought that the most vulnerable people in our society are having their basic rights threatened is something that terrifies me. And it appears that I am not alone. There is a petition calling for a cumulative impact assessment on welfare reforms which has already got the 100.000 signatures that are needed to debate the issue in parliament (http://wowpetition.com/).
I am hoping that as my MP you will stand up for the disabled people in your constituency and call for a debate on this subject and then attend in order to vote on it.
I have a disabled child who is currently supported in a mainstream school. With the right help he is accessing the same education as the other children and he has hopes and ambitions just like the other children. But he is currently facing a future where his life will be limited by the cuts that are being made to the very support that would have granted him independence and stopped him being a dependent adult. This not only jeopardises his chances of achieving his ambitions, but will likely cost the state far more in the long run.
I hope you will support this very important cause.