Support needed for the struggle Can you respond?

I have my life ahead of me but I don’t really feel like I can cope with adapting and making do for the rest of my life. I’m 21 old and have cerebral palsy. I struggle with depression a lot and although I admire some other disabled people for what they have achieved, I don’t really feel that I can do the same.

cerebral palsy1This picture and the one below illustrate aspects of cerebral palsy. They do not relate to the writer in this post

Nobody really understands my pain, I find it hard to watch everyone around me go to university, get a job, have relationships or go travelling and take everyday things for granted while I plod along. I’ve thought about ending it all but my family and friends would never understand and probably resent me for it but to me, but I sometimes feel that I have no other option because all I see in front of me is a life of misery and hardship. I hate it too much to live with it. I was just wondering if there was any advice anyone out there could give me? Have you ever felt a similar way? I’ve been on antidepressants on and off for about 6 years as well as going through counselling and visiting psychiatrists – I don’t mean to unload on anyone but I would like a perspective from someone who knows how it feels. It would help to know that I’m not alone.

Advertisements

Prejudice and discrimination

Although we do not like to admit it, we all have prejudices. However in  fair society  we must try to  ensure that our prejudices do not become discrimination.

 IMGP0691

P1050963-001

My sons  – both black and disabled!

Prejudice is an unjustified or inaccurate attitude towards an individual based solely on the individual’s membership of a  group. Many people will have prejudices against people  with disability, people of a different colour or those who are different from them in some way. They may think that having children with disabilities in their school will affect the progress of other children; they may think that all people  with disabilities are stupid, difficult or incapable of following the regular curriculum, unable to work, have relationships or be full members of society. Although it would be better if we  were not prejudiced, must of us are, one way or another, we  to ensure that prejudices do not become discrimination. We have to be sure that we do not discriminate, whatever our personal prejudices may be. Discrimination occurs when an individual or group behave in a negative way towards an individual or group of people, such as people with disabilities. A prejudiced person may not act on their attitude. So someone can be prejudiced towards a certain group but not discriminate against them. Discrimination involves behaviour and that is what we  can control – we  cannot control attitudes. But you may think otherwise! However, prejudiced attitudes are often changed when people have contact with the group they were prejudiced against. They realise that their attitudes were inaccurate. However, close contact sometimes hardens prejudices. Why not challenge yourself to think about prejudice and discrimination. What should the education system be doing to challenge this discrimination? Think about what you could do. What could you do yourself to challenge this discrimination? Whose discriminatory behaviour should you challenge? Think about yourself.  What are your prejudices? Is any of your own behaviour discriminatory? Remember that disabled people can be equally prejudiced, as can black people and other groups who are themselves the victims  of prejudice and discrimination.

IMGP0618                    IMG_0408

Living with autism – a sister’s story

It’s often difficult for people with a disability to lead an ordinary life but  it’s often difficult for family members too.  Family members may feel that they cannot express their true feelings. Emma, whose story is set out here, bravely sets down her feelings about her brother’s autism. Her story is included here to show just how difficult it can be to live with a severely autistic sibling – and to show that it is OK to express negative feelings. We don’t have to be saints!

I have never accepted my brother’s autism and have found it very difficult to deal with. His name is Daniel, and he has severe autism. I am 18 years old, and he is 16, with the mind of an infant. I shall never hear my brother say my name. He cannot speak, is still in nappies, and has been living in a special care home for four years due to his unmanageable behaviour. Whilst I was growing up, I found life very difficult. I buried my head in class work and focused on getting the best out of life. I am going to university soon and I am immensely proud of what I managed to achieve despite everything that was going on around me

. After my brother was diagnosed with autism at the age of two, my life turned upside down. For the next 10 years, social workers and helpers would constantly be in-and-out of the house, discussing my brother’s needs. Conversations between friends and family would often be related to Daniel, and disability.

I missed out on many normal things in my childhood. My parents tried to make time, but they were often too stressed and preoccupied with managing my brother to listen to my worries. I would often shut myself in my room and cry, while my brother watched ‘Jungle Book’ for the 1000th time, making a big noise downstairs. He would wake up in the middle of the night and kick my bedroom wall, making sleeping a difficult task in my house. Doors, windows and cupboards had to be locked and I couldn’t leave out any toys, school or art work because they would get eaten or ruined.

On a few occasions, my brother managed to escape from the house and ended up on a nearby road. I’ve always thought that he’s like a cat with nine lives. Once, I forgot to shut the front door of the house when I was watering my plant in the front garden and he ended up on a platform of the nearby train station. I hate to imagine the guilt I would have lived with from the age of 10, had anything happened to him

. I wish I could accept his autism, and perhaps I shall in time. I suppose I just need to move on from imagining the ‘what if?’ life I could have had with a normal sibling, a close friend you grow older and shared special occasions with. I have so many memories of my brother running around the house naked before his bath, or running into my room screaming or trying to hit or bite my parents. It felt like he always had an excuse for bad behaviour. On other occasions, he was funny and would just keep himself happy

. I often fear the future. I fear what would happen if my parents died and I’d be his only family left. I fear that my own children which I so long to have in the future, will be severely autistic too. I am sad that he will miss out on life’s beauty, will never have children of his own, and will never be able to live without care.

I wish he could talk to me, and I wish I could be strong enough to visit him once in a while. But I find it so hard to see my teenage brother getting older in appearance but remain the same in mental age. Mum and I have often said how we wish he could stop growing and remain a little child forever. I hope one day I stop feeling jealous of my friends and family with normal siblings. I hope one day my relationship with other members of my family will not be so strained. Although I still get depressed about having an autistic brother, I have definitely learnt to appreciate life. I work hard towards a life I am grateful to have. I am compassionate towards those in need, and don’t worry about trivial things. I am so close to my mum, and I love spending time with her, as well as my cousins when I can see them.

I don’t hate my brother – I hate autism, and what it’s done to my family.

Click here to go to the website of The National  Autistic Society for information about autism

Smart answers needed

Divya Babba, a 19 year old wheelchair user with spinal muscular atrophy, reveals the offensive, ridiculous and frankly absurd things people say to wheelchair users.

Have you experienced these, or similar,comments or questions? If you have, or even if you haven’t, can you suggest suitable responses?

I was having dinner and, when it was my turn to order, the waiter pointed at me and asked my friend, “And what will she have?”

This wasn’t the first time that someone had underestimated my ability to think and speak. When you’re in a wheelchair, people often think your disability affects your brain and not just your body. The unfamiliarity of being around a disabled person can cause people to come out with the most absurd things. Do they see the unexpected and panic? Are they just ignorant? Maybe a bit of both. Either way, here’s my top pick of the most ridiculous FAQs and opening gambits:
1. “So, what’s wrong with you?” – Many people are under the impression that this is the conversational equivalent of “How are you?” It’s not.
2. “Can you have sex?” – Last time I checked, I still had all my lady parts.
3. “Do you sleep in your chair?” – Just because I can’t walk, it doesn’t mean that I can’t sleep in a bed.
4. “If I were in your shoes, I would never be able to leave the house.”– You’d feel differently if you were. Everybody learns to cope with his/her disadvantages.
5. “You’re so pretty, even though you’re in a wheelchair.” – Thanks!
6. “You should really try to walk instead of relying on your wheelchair. It might help.” – I would if I could, don’t ya think?
7. “Why do you wear shoes if you don’t need them?” – First of all, shoes are fashionable. Second, they keep your feet warm. Third, do you take your shoes off every time you sit down?
8. “Do you have a licence for that thing?” – This question is usually accompanied by a chuckle… it’s not funny.
9. “Do you ever wish that your siblings were disabled instead of you?” – I was asked this question at a university interview and was too stunned to retort, “Do you ever wish your siblings were socially inept instead of you?”
10. “You’re actually really smart. Wow!”
11. “You’re so lucky you use a wheelchair and can sit down all day!” – Oh boy, I know, livin’ the dream.
12. “Can I please pray for you?”– No thanks, I’m fine. Pray for people who are starving or dying in war.
13. “Be careful not to run me over!” – Believe me, if I run you over, it won’t be a mistake.

Click here to see other articles by Divya

Hello and welcome

SAM_0148My new blog is about the realities of the ordinary lives of:

  • people with disabilities
  • the parents of a son or daughter with a disability
  • those who have a partner, relative or close friend with a disability

and the ways in which their lives can be improved. It is also about the ways in which those who work in the education or support services for people with disabilities or their families can make it possible for people to live the life that suits them best.

My name is Matthew Griffiths.

IMG_0285-1

 I have worked to improve the lives of disabled people for more than forty years and I have learned a great deal from them, their families and friends and those who work with and for them. My two sons, with their very different disabilities, have also been not only a great source of joy but also of learning and roller coaster emotions. I have decided to share my all experience and the experience of others, especially those who have a disability or who live or work closely with someone with a disability, to stimulate discussion of important issues and to publicise what people have found helpful in helping them lead ordinary lives – and what didn’t work.

I will be writing from my own experience, both personal and professional. but I want to hear from you about anything you think is relevant.

What are the big issues for you around your disability or that of someone close to you? What has helped you live the life you want to live, what has got in the way  and what has helped you get over or round obstacles?

it would be great if you continue to read my posts. and even better if you get in touch!