Identifying your True Support System
By Melissa K. Vassar-Belloso
Introduction
Being disabled is difficult,especially when you don’t have a solid support system. As an adult I’ve been learning the hard way who is truly on my team and seeing the many flaws I made growing up about who I thought was in my support system. It’s different when you’re a child because in a way we have a society that naturally coddles children through a number of different circumstances and if that falls through what can you really do as a child. You don’t have money,power or property and you just have to accept whatever life gives you as support for your disability.
When you become an adult however, the situation is very different. People now assume you should be able to care for yourself with the sheer will of being an adult. They also seem to assume they don’t need to worry about you because screw being an adult with moral responsibilities. I don’t see why we’d want to sign on for that program as human beings.
Pardon my sarcasm, folks. It just really baffles me how selfish modern adults are and how insightful and driven the kids are becoming to compensate for the adults around them basically failing them. It might be a sign the adult community needs to start stepping up its game and actually attempt to grow up. Moral responsibility is something every human being should have or strive for yet we are severely lacking in it these days. But in a lot of recent events in news and such I see so many kids doing what the adults should be doing and it’s very sad to me. Kids should be able to be kids. They shouldn’t have to have the stress of doing the adult jobs while the “adults” screw around being selfish and childish. But the rest of that rant is for another post.
Now please don’t get the wrong idea here because I do realize there are disabled children having issues too. My point is that when it comes to protecting and supporting the disabled there’s a disparate difference between what is available to children and what is available to adults. The government and people out in the world tend to see children as needing much more support than disabled adults and this isn’t always the case. What should be happening is that we work on systems that are just made to help people without looking at them as a statistic or demographic. I doubt this miraculous health system is on the way anytime soon but it would be nice.
I think what people want to ignore as hard as possible is that transition. Disabled children don’t grow into non-disabled adults and blend into a crowd. They grow into disabled adults. However, there is a huge difference in attitude toward a disabled adult. It’s an approach that usually lacks a lot of the sympathy and understanding offered to children. The sympathy and sometimes obligatory sense of justice we feel when we encounter disabled children turns into rolled eyes and assumptions with the disabled adult they grow into. It’s hard to say why this is. It could be because our society puts way to much weight on responsibilities for adults and doesn’t consider the disability in enough importance but it could also be because we’ve created a sort of misconception that disabilities somehow taper off or go away when disabled children get older. Let’s be clear and honest here,folks. Disabilities don’t go away!
If you know someone as a child who is disabled they are still going to have that disability just as much as an adult. It won’t taper off. It won’t heal or go away. That person is going to be disabled until they’re put into a coffin. You can treat it with all the medication,therapy, and moral support you want but they will still be disabled. Growing into an adult doesn’t make a disability lessen or vanish. That adult still needs support and treatment as much as they did when they were a child. Did I bust that myth open wide enough for everyone? I hope so.
Unless you’ve been on the end of being patronized as a disabled adult you will never know the horror this misconception in our society causes. Since I’ve become an adult people who used to support me have dropped off like flies or just started treating me completely differently. People will gladly fuss over a child having a panic attack but if I called into work mentioning it I could just hear the eye rolling through the phone. It’s still just as real when these things happen to adults. We are still just as scared,just as in pain and just as in need of some understanding as we were as kids.
Assuming that I’m somehow better equipped or less affected by my disability just because I started paying taxes is very wrong and shortsighted. Care and support needs to be consistent whether a person is 3 or 30. I can’t count how many panic attacks or major depressive episodes I’ve had but I can guarantee you they are just as scary if not moreso as an adult.
I’d even go out on a limb and say it is scarier as an adult. As a child you have much lower stakes to deal with. You don’t have a sense of permanence in a lot of ways. You don’t own property. You don’t have a degree to utilize. You don’t have bills to pay. You don’t even really have a real reputation to worry about. You’re a tiny and fickle little organism floating in a big world full of color and noise. If you have some kind of upset you have no job to lose, you can easily find more friends on the playground and you don’t have to worry about debt collectors chasing you or getting things repossessed. I’m not saying kids aren’t important but the permanence just isn’t there and you have a lot less to lose when a disability rears its head and throws you a curveball.
As an adult one panic attack,manic episode,or nervous breakdown could take every single thing you’ve worked for. The tiptoeing that disabled adults do out of fear of losing everything is tremendous and tiring. This is just made worse when we’re in a world that doesn’t value or understand us. I used to actually be afraid to call in with a panic attack or a mental health issue and would frequently make up something else instead. I recall feeling like I was never taken seriously if it was something in regards to mental health. I felt ashamed to show discharge papers when I had to spend 72 hours in a psychiatric hospital. We’ve created a hugely hostile environment for disabled adults to the point we shame people out of taking decent care of themselves. For the number of people like me who still get some help and then beat themselves down for it later there are millions in America too ashamed and bullied by society to even seek help.
But really the point of this article isn’t to point out America being afraid to talk about disabilities. It’s about support systems. Without a support system no disabled person can move forward in any capacity. When we talk about “support” we mean services and people that supply something the disabled person needs. I’d like to really break down first the different kinds of support there are and then address the meat and potatoes of the article which is how they work between children and adults and of course some more practical and personal insight into the supports as well.
What Makes a Support Network
Government Supports
These types of supports are primarily service and monetary based. Think about things like grants,rehabilitation programs,or alternative financial supports like SSDI.
Community & Social Services
These types of supports are similar to what governments may offer but on a smaller or more local scale. Think of things like welfare,free services,or medicaid. Many of these service can mesh with government ones but they typically are applied at a more local level at the end of the day and with some but definitely not all the pointless bureaucracy cut out. The main difference is that with most strictly government supports you never see a person but if you applied for food stamps you’d go to a local welfare office and see a person. Social services tend to split off from the government aspect to the point where you deal with local people. Now with what I would consider a community service the big difference is how close to rock bottom you are. Some community and social based services never kick in until you have next to nothing or nothing at all. This makes them helpful but only if you fit very dire and specific criteria.
Medical Supports
This type of support is something every disabled person needs to have in place but this is easier said then done. Finding the doctors you need and getting that doctor covered can be a huge quest. With some types of doctors you also have to factor in the building of a personal relationship and I can say from experience that finding a therapist is kind of like online dating at times. You go through a lot of bad dates before finding a doctor that understands and suits you and if you’re lucky your able to afford seeing them. A lot of people also may not realize you often have another person for medications. There are many schools of medical professionals within mental health and most therapists can’t prescribe medications. There are also Psychiatrists and Psychotherapists just to name a few. Finding and maintaining medical supports is tedious and draining for a disabled person and depending on how many doctors you see and how often it can be the worst part of the process which is why you need the last type of support.
Personal Supports
Personal supports are the most important part of a disabled person’s circle. While the other supports are needed and there,having friends and family is what glues the process together. If a disabled person can’t for instance apply the skills and knowledge from therapy in a stable home environment,have a reliable person to take them to a doctor or have a person they can trust to help them muddle through forms for social services they may as well be on a raft in the middle of the sea with land always in sight but just out of reach. A lot of disabled people still need moral and emotional support most of all. They need a circle of people that accept and love them. When you don’t have that it makes healing nearly impossible and it leaves a huge hole in the support system. It’s not seen as a huge part of the job for the government,county,or even your doctor to fully emotionally support you. They assume you have a personal network most times and that’s sadly not always the case. From personal experience I can say that it cuts a whole lot deeper if you have a family member or friend that doesn’t want to accept or support you.
A Deeper Look at Support Systems
When we really look at these supports as broken out parts, it becomes really obvious why you need all of them. They all serve a purpose and can’t really cross over too widely into one another. Now as a disclaimer I’m going to really look at these comparisons from my own personal standpoint. This means that it may not apply widely or you might disagree because it’s at least partially opinion based. That’s perfectly fine. It’s called having an opinion and I respect that. Now for the sake of full disclosure I’m in my thirties and I was diagnosed and in the mental health system somewhere around age 13 or 14. That should give you a decent idea of how long I’ve been diagnosed with a disability and in the system as they say.
Government
I can honestly say I never dealt too much with government based support. My family isn’t wealthy but I had dinner and a bed to sleep in each night. The time I did try for SSI at a somewhat more tender age I was considered too competent but that’s more in line with my article a few back and my issues with how we determine people are disabled. Also, to be fair my mother looked into the wrong thing. As a very important fact for parents who have disabled children,go for SSDI. You can get support for the child based on the social security you’ve earned and if you’re a working parent this is probably a more viable option than SSI. Government based services to be honest went over my head as a kid. I didn’t understand them or even have a full grasp of government things so it’s hard to give a fair shake to how they stack up between the age groups.
What can be noticeable is how many grants and government services benefit kids versus adults. There are a lot more government based supports for children. I’m actually okay with that. I think that kids need someone in their corner if the personal and local supports fail. I think there’s still a lot of room for improvement in how the government aids disabled adults but I also like there are plans so kids can eat and see a doctor. That’s a good thing and when it works it saves children from starving and dying. It means families truly struggling can have the peace of their children having support. I can’t honestly complain about the government focusing more on children and families. It makes sense for government services to be kind of faceless and demographic based. That’s how governments work sometimes. I don’t have the blind expectation the government owes me a hug and moral support at the end of the day because that’s pretty unreasonable. It’s not unreasonable to want to be seen as a person and again, there’s definitely room for improvement as there would be for most anything but for what it is I think the help the government can give those in need is logically balanced in a weird sense. I would focus on kids and families too.
Community and Social
Now for this I should preface with the fact I live in a very small place. When we talk about what a community or social service provides we have to also consider their means. Smaller cities and rural areas have overall a smaller amount of medical professionals, a smaller pool of educated workers, and often a larger pool of people in need than services can reasonably cover. It not only changes the services but also the approach. I would compare the services in our county to a sort of mental health McDonald’s to be honest. It’s not bad but it will only do so much and have a more blanketed approach. As part of the 1% that always slips through the cracks I’ve actually gotten to a point where county services can’t help me. I want to get better and not just stabilize and adjust to some cookie cutter reality. I’ve never been okay with being medicated and shoved in a corner but that’s what a lot of small county approaches do to people unfortunately. I reached a point where I realized they either didn’t know how to treat self-aware patients or just didn’t care because honestly a lot of them seemed pretty disgruntled or complacent. Any person not just wanting to pop a pill and be forever seen as a diagnosis on a paper before a person just doesn’t fit the puzzle that is county based care. This could just be a failure of small town care but what if it isn’t?
It’s hard to imagine but the idea of just hiding our mentally ill until they die off isn’t a plot from a horror movie. There was an era where this was a mass approach and thousands died of neglect in mental hospitals. The same thing can be said in a way about modern mental health treatment. We make a show of caring while a person is in a target demographic for that sympathy and care and then abandon them as adults by limiting the services they can get or not doing it to the same degree of concern as we do with children. Mental health treatment in states and counties that is aimed at adults is lazier in my opinion. There was always much more drive in the doctors I saw as a teenager in comparison to the lackluster service I got going into adulthood. It was almost like every doctor just couldn’t be bothered to do anything beyond handing me some pills and shooing me off into the world.
After enough of not being listened to by my doctors I was often forced into very tough positions. The one county facility I went to actually ruined my medication management badly enough to almost kill me on two separate occasions. I would actually be dead right now if I didn’t go the extra personal mile of educating myself on my medications and condition. The lack of concern in my treatment was literally near fatal and that’s a scary thing to think about. Consider for a moment the average person with little or no self-awareness intact going in for that and maybe just getting killed off by a system that doesn’t care or see them as a person. Additionally the lack of care and frequency of misdiagnosis from some services is staggering. Many people like myself are in a strange situation of just now getting diagnosed properly because of lazy and uncaring professionals in smaller mental health care systems. I lost over ten years being treated and tormented by a condition I didn’t have that it appeared I had because of lackluster care. Treating a person for the wrong condition with mental health can be a very bad situation because you can create a condition by medicating them the wrong way.
Many of these systems are actually more concerned about being mass pill dispensers before health facilities so instead of doing proper medication management they focus on prescribing as many pills as possible. Part of this is because certain quotas and numbers dictate what kind of government and other funding they can get so instead of treating patients they’re focusing on how to get money into the facility. This is all well and good because it’s a business that needs to keep doors open but it leave patients drifting in the middle and not really getting any benefit from treatment.
One of the biggest pitfalls with this level of treatment is how utterly generic it is. Often you can get basic cookie cutter treatments made to suit a wide range of people but if you need anything outside of that you’re pretty screwed. If you’re looking for any kind of dramatic change and improvement in your condition you probably won’t get it from limited small county based service and you definitely won’t get anywhere if you aren’t an advocate for yourself to some degree. You have to put in a lot of work to get noticed in these types of systems and that’s not even a guarantee you’ll get rewarded for the effort.
Now with social services I actually see why the blanket approach is taken. When you think of social services they are typically not just for the disabled. They are for a wider range of afflictions and specific circumstances.In situations like that I can sort of excuse the bland approach because when you’re in a certain crisis situation you usually need something equally as specific as your problem and it’s more likely to be a common problem that doesn’t need special attention. Something like not having insurance or not being able to buy groceries is a problem we all run into disabled or not so these types of services while vital to a disabled person are meant to cover a lot more ground.
Now like the government types of services a lot of social services do the same route of focusing mainly on certain demographics such as children,women, and struggling families. I think for the general sorts of services that fit as a social service that’s perfectly fine.
I don’t think it excuses how some small counties handle services though.There’s so much room for change in smaller networks of services for the disabled. There needs to be a reform there for everyone’s sake. I don’t even just mean on a mental health level. There needs to be more consideration within small counties and within states for the disabled occupants. Improving services,retraining health professionals to treat patients like real people and increasing awareness and education on disabilities is just a starter suggestion. So many states and cities have locally provided services running on bad manners,bottom lines, and assumptions. Change needs to happen. For the number of disabled people who are basically forced to live off of what they can get in services locally there needs to be a much more serious approach to these things adding quality of life instead of taking it away.
I generally found my medical treatment in general got better when I had to travel to an actual city for it. I see most of my doctors a few hours away in Pittsburgh because the treatment is better and the doctors are more professional. The standards in treatment in a major city versus a small town makes a huge difference. The pool of professionals grows significantly and the range of expertise widens. You actually have choices and usually get taken a lot more seriously. There’s even a noted difference between the UPMC Cancer Center 10 minutes away from me in comparison to the much better staffed and equipped one in Pittsburgh. I guess if you care enough about yourself and you’re fed up with your small town services,love yourself enough to travel a little. Smaller counties aren’t always equipped to go the extra mile for people for one reason or another. I think in a lot of places they do the best they can but just don’t have the means to do more than that. Good treatment comes from places with the means and pool of people to make it work.
Now as far as age groups are concerned I will say smaller scaled services mainly work for children. They can be a great boon for parents who have children who need help and most facilities are very accommodating when it’s a family with children. If you are an adult seeking care don’t settle. Seek out the best care and shop your options. If you are an adult seeking care for your children try to utilize but not be dependent on the county provided services in a smaller city or town. Don’t be afraid to question them and stay part of the process. Staying involved with your child’s treatment is key. If something isn’t right don’t hesitate to speak up and if you aren’t happy with the care then seek other avenues. Don’t be afraid to seek private providers or travel a little if you find a better service elsewhere. Most of all be educated. Anyone receiving treatment for a disability should educate themselves on their condition and treatment options. Don’t just assume the people treating you or your child have best interests at heart all the time. You need to be aware of what’s going on and be forward thinking for the process to work and not just a passenger on a ride.
Medical
Most of what I would say here is going to mirror what I said about county services. Depending on your disability you might need a lot of different doctors and maybe some specialists. I can’t say I’ve really been impressed with any doctors I see locally. One of the reasons for this is because a lot of times the pool of available and educated professionals in smaller communities is not as impressive as with a larger city. You might also find that small town medical professionals are a little more disgruntled. I can’t tell you how many therapists I went to under the county place I went to that were usually disgruntled or dismissive at best if not completely transparent about hating their job but when I go to one in a Pittsburgh facility they do their job and look you in the eye.They seem a little happier with life. I’m no expert but I’ve adulted enough to identify “I hate my tiny paycheck” syndrome. Unfortunately while most of us vent frustrations in mostly harmless ways, medical professionals pose a danger to patients when they let that happen.
I can honestly say that the search for the right doctors is kind of daunting regardless though.A lot of times for disabilities you need specialists and while I can sort of give a pass on my general practitioner or some schmuck at a MedExpress, I have to be a little pickier when it comes to a rheumatologist, hematologist and as I’m recently finding a mental health place that has anyone able to work with adult autism patients. Personally speaking I’m not sure that process is any better for children or adults. Finding doctors is time consuming,frustrating and sometimes expensive no matter what age the patient is.
What I would say is again…..be willing to travel. Take the time to find a good doctor you trust that treats you the right way. Invest in yourself. Most of all don’t discount the value having a good medical support network gives your life. Having the right doctors supporting you can make huge difference and change your quality of life.
Personal
So to build on what I said above, personal supports are undeniably the most important part of a disabled person’s support network. A good personal support network will foster learning,growth,and quality of life as well the glue and grounding the disabled person needs to benefit from the other support types. I would at least assume that most disabled people getting into adulthood know they’re limitations at least partially. Like to some degree as I grew into an adult I was able to identify what was and wasn’t within reach on my own and what I needed others for.
As a child I really mainly had my mother and that was it. My father was not and still isn’t supportive in the difficulties my disabilities have caused. To his credit he’s from an older era where you didn’t really talk about mental health but it’s still a hard thing for me to come to terms with and not a perfect excuse. I’ve had to come to terms with a lot of people not being with me for the long haul as I’ve grown into an adult and that’s been hard. It’s gotten much better with my husband in my life but the pain from not having my family behind me 100% in my troubles is definitely a slow heal if it truly heals at all. I think the feeling of a parent not accepting you as their child is just unnatural and hard to understand even as an adult. It sort of goes against nature and expectation.
I’ve dealt with a lot of people who get scared or confused. I had a good number of friends in high school especially that just dropped like flies because they were confronting something different and scary as a child would. Teenagers are pretty much still children mentally. It still hurt me a good bit but as I grew up and learned more about life I’ve been able to forgive that.
I think one of the common things I’ve heard speaking with other disabled people I’ve bonded with over the years was pretty similar in that you do see people just leave your life and it hurts until you realize those people were maybe not the best thing for you anyways. There are some people who might want to support you but they just aren’t equipped to be on the journey with you for one reason or another. It’s a thing you learn to accept.
I think with people in general it’s very normal to end life with less people in your personal circle than you started with. This is just an especially painful process when you’re disabled. People leave you frequently and finding emotional support that’s real is a daunting process that can take years. Some people for instance are very excitable about supporting you until you actually show symptoms or have difficulties you need to actually ask for help with. When the situation becomes a little too real they either lash out or just bail on you. It’s unfortunately a pretty common type of clinger you pick up when you’re disabled. I’ve never figured out why but I can only sort of guess maybe these people somehow feel better about themselves befriending a disabled person but aren’t genuinely good and understanding to really support them when they show more overt signs of being disabled. The percentage of people that are willing to say they support you versus the ones that actually stick around when you really need support are two very different numbers.
I don’t always get sour with people over this because not all of them do it maliciously. I’ve grown a lot more in identifying the people who truly are malicious and non-supportive as well as the ones who are trying and just aren’t ready for a real battle. Regardless, the real support network most disabled people are left with is small. I’ve actually come to realize the best support network is other people who have been there. I’ve started valuing the friendships I have with other disabled adults who truly understand me and see the less stable or “fair weather” supporters in my family for what they’re worth. The worst mistake I made was assuming my family would love me. Just because someone is in a role where they should be doing something doesn’t mean they will and that’s a sad reality to adjust to. I think my best advice for anyone struggling with their personal support network is to be realistic and don’t be afraid to think outside your family. While you might be able to depend on them in an ideal family you still have to branch out for the best hopes of solid support into adulthood.
Find a smaller circle of people that will truly support you and respect you while actually being open to understanding what you’re going through. The value in a personal support network is in loyalty and not numbers but it is absolutely essential to quality of life if you’re disabled.
If you are in a position of trying to be part of someone’s support network be open-minded and understanding. Don’t expect it to be an easy thing to do. The person is disabled but they are still human. They are still going to have feelings,bad days,and opinions just like you. Don’t take the attitude of treating them as less of a person or lashing out at them when they aren’t at 100%. Don’t expect things will always be fine. If a person tells you they have a disability at a state they are doing relatively well,don’t scold them when the condition brings out something you aren’t able to handle. If it’s not something you can handle be honest and reasonable about that and the disabled person will appreciate that a lot more than you treating them poorly and pushing them away. For a disabled person trust is hard to place and even harder to restore if you break it. If you are a person they’re reaching out to and willing to trust, understand that’s a very difficult process for the person and be honest about whether it’s something you’re capable of doing for them.
I think personal support networks definitely differ for children and adults. When you’re a child you don’t fully fathom life with a disability and will have more of a network for a sheer fact people are generally more willing to help children over other adults that they perceive as being more capable. As you grow out of being a child your support network will naturally taper off but what matters are the people who stay by you. Don’t sit around and mourn the loss of what may have been toxic people anyways. I know how easy it is to get sucked into thinking you need a lot of people but at the end of the day it’s better to have a few good people over a crowd of fickle ones. Never settle when it comes to your personal support network. If a person treats you poorly or seems to only want to be there when it’s convenient for them then stop wasting energy on a person who isn’t willing to invest in you as a person. It can be a hard thing to do but it’s worth it in the long run.
In Conclusion….
Living with a disability is difficult and it’s not something you can do alone. Taking the time to secure the services,doctors and supports you need is a vital step in improving your quality of life. One of the hardest conclusions I’m coming to is that you have to be an active advocate in your health to succeed. That means finding value in yourself and investing in yourself to the point you find the right medical professionals,services and personal contacts that will be in your corner when you have difficulties handling your situation.
Understanding what you personally need to have a good life is important and while it may be a little extra work, taking the time to establish a solid network of supports will take a lot of weight off your shoulders. Don’t be afraid to step up and do what you need to do to be happy and successful in life.
